tag:blogger.com,1999:blog-17592283909272872962018-03-05T16:24:02.087+00:00Our Autism JourneyMummy to one gorgeous toddler called River. We first suspected he was on the autistic spectrum when he was 16 months &amp; we received a diagnosis of autism at 23 months. This is our journey.Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.comBlogger43125tag:blogger.com,1999:blog-1759228390927287296.post-67857074800930797482015-06-25T22:16:00.000+01:002015-06-25T22:17:23.549+01:00Hopes and fears.Last week marked three years since River was diagnosed with autism. I had a read through some of the old blog posts from around that time, including&nbsp;<a href="http://aworldofspinning.blogspot.co.uk/2012/06/it-is-definite-that-your-son-has-autism.html" target="_blank">this one</a>&nbsp;from the day he was diagnosed and can't believe how much he's changed. There are many things that, when on paper, make it seem like our fears were unfounded and could probably give the illusion that we can now rest easy, breathe a sigh of relief. At the age of nearly five, he's fully toilet trained. His speech is pretty good. He can communicate his needs. He has the most incredible memory. His reading ability is incredible. He's pretty hot at maths. During 1-1 lessons at school, he remains seated and fully focused for a good 20 minutes. &nbsp;He's spending about a third of his school day with his mainstream class. But their is more to a child's development than that.<br />As he gets older, new issues arise. He has never been a violent child, but lately he has been constantly slapping, grabbing or being generally rough. He knows it isn't nice, that it hurts, but he doesn't understand what "why" means so can't tell us why he's doing it- and probably doesn't know either. When he doesn't have a very structured activity to focus on, he is really hyperactive and very noisy. He will run up and down, making a constant groaning noise that he is seemingly unaware of, and will chew anything and everything. He's quite keen on chewing on my sandal straps, Tim's Crocs, the plastic cover on my phone. He operates at 100mph, all the time. It's exhausting.<br />He has no sense of danger. That includes the dangers of chewing on (plugged in) phone chargers and similar wires, running into roads or in car parks, or asking random strangers their name and age.<br />For the first two or three years of his life, he was an amazing sleeper. He was That Baby who slept through from 6 weeks, self-settled, and had consistently long daytime naps. Then as his mind got more and more active, he lost the ability to switch it off. Sometimes he sleeps brilliantly, but more often than not he will take at least an hour, sometimes two, to fall asleep (he currently lists-out loud- the ages of every person he's ever met, in numerical order, each one repeated twice. For example: "Dylan is 1, Dylan is 1. Ollie is 2, Ollie is 2. Coby is 3, Coby is 3" all the way up to, "Keith is 70, Keith is 70. Pops is 71, Pops is 71..." Dylan was a baby he saw briefly in our doctor's surgery. Ollie is a friend's child he's met twice. Coby was a boy he knew at preschool. Keith is his old taxi driver.) Somehow, &nbsp;he just remembers all of this stuff and then needs to process it before bed.<br />Then he's often awake for a couple of hours in the night. He doesn't need us, he just chats to himself and sometimes walks up and down his bed, but it obviously keeps us awake.<br />He's understanding and interaction is still really poor. It's certainly improved a lot, but you can't have a conversation with him.<br />We of course hope that these will all get better- we've often thought, "will this ever change, will he ever learn xyz?" and before we know it, it's no longer an issue. But it's not guaranteed, and the "What if's" can be hard to block out some times.<br /><br />River's biggest challenge, however, is coming up in a few weeks. We are having a baby, and River's world is about to be turned on it's head. He sort of understands what is going to happen but probably doesn't understand how permanent it will be.<br />People ask all the time how I think River will be when the baby arrives, but something that I think about more is how we as parents will cope- in two different senses. Firstly, I worry about how we will cope practically. Every parent adding to their family wonders how they will juggle each person's needs and how the family dynamics will change, but when you have a child with special needs it's a totally different ball game. The baby is due in the school holidays, so we won't get our usual respite when River is at school. We also don't have much practical family support close by, so it's going to be intense!<br />Secondly, I worry about something very different to most parents adding to their family. It's really common to hear expectant parents say, "Will I love this baby as much as I love my existing child? I can't imagine loving anyone that much."<br />I love River unconditionally. Autism can push you to breaking point, and if you don't break, it's safe to assume that love is pretty strong. But there are certain aspects of parenting- certain lovely aspects- that we don't get from River. He doesn't cry out for us in the night. He doesn't want us to comfort him when he's sad or scared or hurt. He doesn't want to kiss or cuddle us or tells us he loves us. He will give us a kiss when asked, but there's no affection there- he's just following an instruction, like bringing me his shoes or touching his toes.<br />So what happens when this new baby wants cuddles and kisses? When she holds on tight to us when she's nervous? When she wraps her arms around my neck and says, "Love you Mummy" - when she offers us all of the love and affection that River isn't able to express?<br /><br />What happens if I start to love her more?<br /><br />Maybe that makes me an awful mother for even considering that it could happen. But it's a very real fear. I'm assuming that I will love her equally, just differently, just as most parents with more than one children do. But no one can tell me for sure, and I'm so scared that I'll let River down by not loving him enough, because someone else has come along who gives and receives love easier than him.Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com2tag:blogger.com,1999:blog-1759228390927287296.post-40238233915198312372014-09-03T09:22:00.001+01:002014-09-03T09:22:08.297+01:00Not what we had planned.So the day has finally arrived. River's first day at school.<br />It's a day we had imagined even before he was born. When we moved to our village I was in the early stages of pregnancy, and we were so happy to be back in the village that Tim grew up in. We walked around the village and up to the primary school that Tim went to as a child. This is the school our children would go to. I imagined doing the school run for the first time- holding the hand of a little boy or girl, probably juggling a baby and maybe a toddler too, and giving them a kiss before watching them walk into the classroom with all the other children. I'd shed a few tears with the other mums, maybe exchanging the usual comments like, "they grow up so fast!" and, "where have our babies gone?!" It might be the first step to making new mum-friends at this special milestone in my child's life and special milestone in my parenting journey.<br /><br />But things don't always work out as you planned them to. This morning, instead of getting both of us ready for the first ever school run, we only had to get River ready. And half an hour before school started- a different school to the one we'd daydreamed about- a taxi arrived outside, with a man &amp; woman we'd never seen before, &amp; five minutes later they were driving away with our precious boy. They would hold his hand as he went into the playground, say the final goodbye to him as he embarked on his first day at school. It wasn't dreadful, it was ok- but it wasn't what we'd planned.<br /><br />River did so well this morning. We got him dressed and explained what would be happening this morning, just as we've done for the last couple of days. He wasn't too keen on the idea of Mummy and Daddy staying at home but didn't protest too much. Before long, there was a knock at the door and Keith the driver and Jane the escort introduced themselves. I gave them an A5 booklet all about River so they can know what might trigger a meltdown, how to handle it, what he loves and hates. Jane came in and met River. We told him he was going to go to school in the taxi with Jane. "I want Mummy &amp; Daddy in the taxi please." He repeated it a few times but in the end was quite happy to give us both a kiss at the door, be led to the car by Jane, and fitted into the car seat by Keith. He looked very confused by the whole arrangement, but not at all upset which was a relief. I felt it was really important to sell it to River as a really positive experience, and also not a massive overwhelming deal, so we stayed really positive and happy and chilled about it all until they were gone, when we shed a little tear.<br /><br />In many ways, we are so so fortunate. We had a look round the village primary a year ago, and whilst it would definitely have been an amazing magical school for a neurotypical child, the headteacher made it very clear that it wasn't the school for River and left us with a heavy heart. Then we found out about the amazing autism unit that River is at this morning- within a tiny mainstream village school, it is run by a very experienced autism teacher alongside two experienced teaching assistants. River will be integrated into a mainstream class-in a school accepting of autism- for as much as he can cope with. We couldn't have found anywhere better.<br />He's been for 8 visits in total in the last 4 months, two of which were in the summer holidays. The autism teacher has also attended three of our multi-agency meetings. So they know him so, so well. And one of them will be by his side for every minute of the day. Most parents of neurotypical children are this morning saying goodbye to their little ones amongst a class of 30 children, with one teacher and one assistant, neither of which know their child yet. We don't have to worry about that. We will be getting a phone call from his teacher today, and a weekly phone call thereafter. He has a daily communication book, so I will know what he's done each day, if he's eaten much, if he was upset about anything. We have so much that most parents won't.<br />We are so grateful that he's got a place at the autism unit- not every town has one. We are grateful that he can talk, and communicate his needs- we were so fearful that he would still be non-verbal at this stage in his life.<br />Today is a massively positive day for River, and for us as a family! He is so academically minded, so very bright, that he is going to thrive at school. He is so, so ready. His mind revolves around academic things! We spent most of yesterday playing with playdough. Did he want to make cute animals or cars or planes? No. He wanted me to make every letter of the alphabet, in order. Then a circle. Then a square. Then triangle, oval, rectangle, pentagon, hexagon, heptagon, octagon, nonagon, decagon, dodecagon. He knew how many sides they all needed. Then sphere, cone, cube, cuboid, cylinder, pyramid, triangular prism. He is very, very ready for school!<br />And just this second, I've had a call from his teacher to let me know that River has arrived safely and is very happy. She is going to call me at 12:30 once he's been put in the taxi to come home. Not many parents are getting that today!!<br /><br />So we are very happy about today- for River. And we aren't dwelling on past dreams too much, as doing that would stop us from embracing the amazing boy and life we do have. But there is still that pang of sadness today, and today is another milestone to remind us of how different our boy is, and how different our journey is compared to most other families. It's not awful, it's just not what we'd planned.Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com4tag:blogger.com,1999:blog-1759228390927287296.post-30035556663608907932014-06-17T20:59:00.002+01:002014-06-17T20:59:40.336+01:00Two years on!I haven't blogged in a while but in a couple of days time it will be two years since River was diagnosed with autism, so now seems like a good time to write.<br />It's a strange feeling, looking over blog posts from around that time and at the lists of his struggles- all of the things he couldn't do, all of the things that we worried he may never do. He has come soooo far- we used to say, "If River can just say a couple of words by the time he starts school, if he can just communicate that he's hurt himself or needs the toilet, just communicate his most basic needs, life will be so much easier for him." Now, he talks all of the time! Constantly. Which, despite being exhausting, is music to our ears.<br /><br />It certainly doesn't mean we're 'out of the woods' though, so to speak. I think many people - myself included at times - have thought that if River can talk, he will be high functioning. He has such a smart mind, is academically advanced, has a photographic memory, that I thought if he can just start talking, and share that knowledge with the world, then he would be ok. Developing speech has indeed helped us to see just how bright he is- he is starting to read, knows many sight words, knows most 2D and some 3D shapes, is good with numbers, and loves putting objects in alphabetical order even without the written word. Speech has shown us that he is academically able to keep up with - and possibly exceed - his neurotypical peers. We know when he's hurt himself (although he usually says, "I want cleaning please") and he can ask for a particular book/toy/song.<br /><br />But that speech also demonstrates his differences and his autistic traits. Nobody knows yet how severe River will be, but there are so many times I hear River talking and get this feeling in the pit of my stomach that River will always talk in this atypical way, that he will be talking like this when he's an adult, and it breaks my heart. This is a typical 'conversation' I can have with River:<br /><br />Me: "River, would you like some porridge?"<br />River: "Porridge. Po-o-o-o-ridge. POOOORidge. Banana porridge. Bana-a-a-a-a-na porridge. Cinnamon and banana porridge. Cinna-MON. Mon. Mon. Police-MON. MOOOOOOON. FireMON. Fire engine...."<br />Me: "River, LOOK at Mummy."<br />River: "Fireman. Fire engine. Ambulance. Police car....."<br />Me: "River, LOOK. Would you like some porridge?"<br />River: "Yes, please!"<br /><br />River has no filter. Whatever is in his head, he says. And I think because he is a visual learner with such an amazing memory, he can't think about any single thing without a million connections entering his head. He may learn to keep the thoughts in his head and not verbalise them, or he may not.<br /><br />He also latches onto certain phrases and repeats them over and over again, throughout the day, for weeks at a time. We had some friends visit a few weeks ago with their children and at one point I said to him, "Isla is reading the truck book." River repeated this a few times, then a few times before he fell asleep. And I've heard it a few times every day since! Other daily phrases include, "Poppy's squeaky giraffe," "Give Amie a high five" and, "Show Daddy your new book."<br />His comprehension, or understanding, is very delayed, and that's probably my biggest concern. It is slowly improving, but again, there are no guarantees that he'll ever 'catch up.'<br /><br />I watched an incredible TEDx video on YouTube the other day about an incredible pianist called Derek Paravicini who has autism and is also blind (for the video, click&nbsp;<a href="https://www.youtube.com/watch?v=3S1HK7LQY2I" target="_blank">here</a>) and it really made me think of River - not that River has these abilities, but the way that Derek speaks is so similar to him.<br /><br />It's a real rollercoaster that I'm sure many autism parents will relate to. We've gone from hoping River will manage a mainstream school, to being sure that he will need to be in a special school, to finding a fantastic autism unit within a mainstream school, to thinking he might possibly transfer fully into the mainstream part of the school in a couple of years time, and just lately I've been wondering if he'll end up transferring from the autism unit to a special school in a couple of years, not because of his academic ability, but because of his comprehension of language and the world around him.<br /><br />Things have changed a lot since he was diagnosed. We don't worry about the same things, and we are (despite much of this post!) able to remain positive more and worry less. In the early days, we were constantly on the brink of despair and would have the odd good day. Now we go weeks, sometimes months, feeling totally positive and then have a week or two of panicking. I think that feeling will always come and go, but hopefully be few and far between.<br /><br />So, for now, I'm concentrate on specific goals to keep my mind off all the other stuff- which are weekly visits to his new school, learning to use a fork, getting him to sit at the table for all meals and stay seated for adult-led activities. I'm hopeful that if we take care of the little things, the big things will take care of themselves.<br /><br /><br />Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com0tag:blogger.com,1999:blog-1759228390927287296.post-56457217142700983452014-04-27T22:15:00.003+01:002014-04-27T22:15:31.382+01:00Guest blog: Being River's dadI think it's been well over a year since I've posted on this blog. Just recently I have felt the desire to write again.<br /><br />This week I took a photo of River on my phone in "mid flight." I could post a picture but I think if you imagine a blur across the screen, arms mid flail, hair flying in the wind, legs similar to the cartoon character road runner then you'd have a pretty good idea. The photo has no detail but is an accurate portrayal of River in his everyday life. 90% of his day is spend in motion, running, spinning, flapping, flailing and yelling..............and it's exhausting.<br /><br />I didn't immediately fall in love with River when he was born. He was a big bruiser, who resembled Phil Mitchell and I found him intimidating. If I didn't witness with my own eyes River being pulled free from Gem I would've wondered if there had been a mix up. How could something so big, burly and hairy come out of somebody so petite? &nbsp;When he first opened his eyes and looked at me I could almost feel him thinking, "Great, I've got a Dad who doesn't have a clue!"<br />I'm happy to say he did grow on me - over the next few days my heart melted and I knew that with such pride I was a Dad to a gorgeous little boy who resembled Phil Mitchell less and less. I also felt he started to cut me a little slack and thought, "yeah, he'll do."<br /><br />River still melts my heart daily. He is the most beautiful little boy, sensitive, intelligent, inquisitive, joyous, interested, special and exhausting. He has energy in abundance, all day long, everyday. His interest in his subjects doesn't waiver, with constant questions then reaffirming again and again and again. His running, spinning, flapping etc makes me dizzy. He is so noisy, with his shouting and his stomping around, he knocks things flying all the time, rips books to pieces, pulls pictures and stickers off the walls, the 2 hour parties he has in the middle of the night and we're definitely not invited, and the routines are difficult, anything differing from his usual schedule throws him totally off kilter. Yesterday Gem wore my coat to go down the garden and it caused a major meltdown. Not having every part of a set of something is another big issue, we spend so much time searching around the house for a red car, the queen of spades or the letter "w" tile, everything grinds to a halt (baths, visiting, shopping, dinner, bedtime) until said set is complete again..............and I get frustrated. Frustrated that I keep repeating the same things, can't go out because we can't find the queen of spades, frustrated that we have to follow such strict routines, that a moment of not thinking could throw out a major part of the day and frustrated at myself for not having more patience for this little person in my life.<br /><br />I've lost my patience in the past and to see River upset because I've been short with him is so tough. I said recently that I not only want teach River about the world but teach the world about River. But I am still no expert myself and still learning.<br /><br />I guess tonight I wanted to put it out there that although I have endless love for my little man, it's still not easy. Some days I still struggle that River is autistic, that everything needs so much planning, that we don't do all the things other families do, that no one can predict how this will run. That maybe one day he might be independent, maybe he won't, maybe one day we won't be able to cope with River. How do you sit with that? I don't know.<br />Also that family and friends are so important. We don't always get back to everyone straight away but every message, every visit, every phone call is so important to us. More than you probably know.<br /><br />I am ok and have so much to look forward and be grateful for. I know this. I am privileged to be River's Dad, I know this too. Sometimes I just think back to the first time he opened his eyes and think I hope he doesn't feel that way again.<br /><br />Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com4tag:blogger.com,1999:blog-1759228390927287296.post-27424860128117299542014-04-12T20:06:00.002+01:002014-04-12T20:54:20.796+01:00The Good, the Bad and the UglyThere was a documentary shown last week called Living with Autism, in light of World Autism Awareness Day. It was really lovely to see autism being discussed on mainstream TV by someone who really understood autism and could explain to the majority of viewers how the autistic mind works. It was also lovely to hear it being talked about in such a positive light. But I don't think it really showed what "living with autism" is.<br />There has been a fair bit of talk on autism support forums about the show, and the general response-which I agree with- is that whilst it was great to have a show that wasn't all doom and gloom, there needed to be more of the negatives shown in balance to the positives. Because living with autism-whilst being joyous and fascinating at times- is heartbreaking and soul destroying at others. And I don't feel you can show one without the other, because that just isn't autism. It is one thing mentioning on a programme that an autistic child may get upset if you move an ornament, but where was the explanation of 'upset?' The explanation of a meltdown? Explaining that 'upset' to an autistic child is not just asking for the ornament to be put back in it's original place, or a few tears. But that child may lie on the floor and scream for hours, may bite themselves or others, may not be able to communicate why they are so upset.<br />Whilst it was fascinating to see these people with autism talk about their interpretations of various experiments, where were the children who couldn't be taken to the shops without screaming? The non-verbal children, parents talking about needing to use visual timetables just to leave the house, the work it takes just to get eye contact, the battles to get the right support in school, the sleep deprivation many autism parents face, the very limited diet, the complex sensory issues?<br />The programme mentioned that 80% of people with autism can't live independently-that is a massive, massive statistic. So I think talking about the reasons why and day-to-day life would have been really good-especially as there was a fair amount of time spent on those with savant abilities, when only 1 in 10 people with autism have such abilities.<br />I know of many people who had asked friends and family to watch the programme thinking it will help them understand what life can be like for them, only to have the impression that autism is fascinating (which it is) and something to be celebrated (which it isn't always) and just a differing personality to the majority (possibly, but it's called a disability for a reason-it's disabling to various degrees.)<br /><br />So, I thought it might be good to write my interpretation of what living with autism means.<br /><br /><u>The Good</u><br />- River doesn't lie-he has no concept of deceit so will openly tell you if he's doing something he shouldn't.<br />- He smiles and laughs and giggles about things we don't know about, several times a day.<br />- He can learn things very quickly as he has an excellent (probably photographic) memory.<br />- He doesn't judge people. He doesn't care if people are fat, thin, rich, poor, from a different culture or class, clever or not. That's probably my favourite thing about River.<br />- He doesn't feel the need to conform.<br />- He has no hidden agendas. You don't have to worry what he really means, what he's really getting at- he is straight to the point (to a certain extent-see next point.....)<br /><br /><u>The Bad</u><br />- River remembers phrases from certain moments in time, and will repeat them at random times when he doesn't know how to express himself. Which is very confusing for an outsider. For example- if he hurts himself or is upset he says, "Bella is finished, ok? Bella is finished" whilst crying. Bella is a character from the Tweenies. I assume that at some point in the past, he was upset at a Tweenies episode finishing and has associated these words with feeling upset.<br />Another example- if he wants a toy that another child has, he will say to me, "I want thank you, please." This is because he knows to say thank you when someone gives him something, so he thinks if he asks for " thank you" he will get the item. He can't just say, "I want that toy."<br />- River's amazing memory is sometimes a hindrance. River has over 50 small toy cars, most of which were bought 2 or 3 at a time from car boots and charity shops over the past couple of years. River knows exactly which ones were given to him at the same time. So if he's playing with one car, he will usually say, "I want the light grey car and the dark orange truck, please" (Or whatever the corresponding cars are.) If you fail to produce these, the fallout is horrific. This is the same for many of his sets of books, crayons, pencils etc.<br />- His diet is limited. River doesn't eat the same food as us. Most of his food is beige (although there are some exceptions) and increasing his acceptance of new foods takes a lot of thought and planning, baby steps. So he used to eat a lot of bread, toast and sandwiches. We started getting him used to rolls, pitta bread, bagels, brioche, croissants to increase his tolerance of different foods. It also takes lots of &nbsp;thinking out of the box (he may not eat spaghetti bolognese, but he'll eat bolognese in a sandwich and on a pizza.)<br />- Getting dressed can be tricky due to sensory issues. He wants deep pressure a lot and things to be tight. So he often gets upset and says, "squeeze your toes, squeeze your other toes." He means that he wants me to squeeze his feet to help him feel more secure. You can imagine how difficult this was when he was non-verbal and couldn't express what was upsetting him.<br />- He doesn't understand that you have to wait for something. He doesn't understand that porridge has to be cooked before he can eat it, that I have to put the fish fingers in the oven as they're Not Cooked Yet. I can't tell him that we're going to the shop after breakfast, as he says, "finished your breakfast, I want shoes on please" and wants to go immediately.<br /><br /><u>The Ugly</u><br />-He doesn't always remember that I can't read his mind. So he needs the toilet, but forgets that I don't know that, then has accidents. Many children with autism are fans of smearing-it's a sensory thing-but thankfully River doesn't do that (yet)<br />-Whilst having breakfast on holiday recently, a waitress tried to engage River in conversation. His reaction: he clamped his hands over his ears, looked at Daddy and loudly declared, "I want 'goodbye' please!" Quite funny, but also quite rude!<br />-It's not just social and communication skills that are affected. They are many, many people with ASD who also suffer from co morbid conditions, including ADHD, SPD (sensory processing disorder) DCD (developmental coordination disorder) epilepsy, Tourette's, anxiety, OCD, Bipolar, hypermobility, bowel disease, immune disorders, mental conditions.....the list goes on.<br />-The ugly is other people's prejudice. The people who shake their head or roll their eyes when your child is screaming in the post office because he doesn't understand why we're standing still (queuing.) The people who don't want their children to play near your child because your child runs and flaps a lot, makes a constantly droning sound, and has the odd screaming meltdown - and therefore may be "unsafe." The people who don't "believe" in autism, that think it's down to bad parenting.<br /><br />So yes, there is plenty of good. But there's also the bad and the ugly, and we have to accept and acknowledge all three if we're really going to talk "living with autism," as that is the reality!Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com2tag:blogger.com,1999:blog-1759228390927287296.post-32258495632981114352013-11-01T00:04:00.001+00:002013-11-01T12:12:32.898+00:00Potty training!I'm not really sure how it's been so long since I last blogged! I had planned on writing in June when it was a year since diagnosis, but then the laptop broke and time has ran away with us.<br /><br />River is developing at such an amazing speed, especially his speech. I wish I had the words to describe watch it feels like to wonder if your child will ever speak and then have them talk to you every day. It feels like such a blessing. To finally start piecing together what's going on in his mind is just incredible.<br /><br />Now that River has found his voice, we're discovering that he's a very bright boy. He has a love of letters, numbers, shapes and colours and is quite advanced in these areas. So so proud!!<br /><br />There's so much I could say about the last few months but I'm not sure where to start so I'll just jump right into where we're at now:<br /><br />WE'RE POTTY TRAINING.<br /><br />I got a book from the library all about potty training children with autism &amp; developmental delays, to prepare myself for possibly training River in the new year. However, the author of the book managed to train her autistic son when he was 2 years old and non-verbal so I thought- why not just do it now? He was asking to have his nappy changed after no.2s, was getting better at sitting for decent lengths at a time and understood "first xyz, then xyz" so could essentially be bribed to use the potty (I prefer to call this positive reinforcement!)<br />This week was half-term so I thought it would be a good time to start. The book advised not to start on a Monday as Monday is always a bit of an unsettled day, so we decided to start on Tuesday. We prepared by:<br />- Decorating the bathroom ceiling with Thomas the Tank Engine stickers<br />- Buying 20 pairs of pants<br />- Making a Thomas-themed sticker reward chart<br />-Buying sticker books as a motivator to stay seated on the toilet<br />- Making a simple visual timetable with PECS cards outlining the toileting routine (Pants down, sit on toilet, pants up, wash hands)<br />- Making a First/Then sign (first wee in the toilet, then sticker chart- although this has now been changed to chocolate)<br />-Buying a toilet insert seat &amp; footstool<br /><br />There are so many extra things to think about when potty training a child with autism. There are a whole host of sensory questions to answer like is the bathroom too overstimulating? Is it too busy/bright? Too echoed or cold? Does it smell of cleaner?<br />As autistic children don't do well with change it's recommended that instead of using a potty or toilet insert seat you should just go straight to using the toilet so you don't have to retrain them to use a normal toilet at a later date. However, River was terrified of falling down the toilet so an insert seat was needed. Also, he has vestibular difficulties and doesn't feel secure if his feet aren't anchored on the floor so we bought a stepstool, but his legs aren't long enough to reach it. He also struggled to sit on the potty as his motor planning skills are weak and he doesn't have the balance and control to crouch down onto something that low - so we're using a potty chair instead which is proving more successful.<br />We've just finished Day Three and there is still a LONG way to go, but we are making progress. He's happy to sit on the potty chair for lengthy amounts of time, he has done several wees on it and a no.2, and tells me when he's having an accident (most of his speech is echolalia so instead of saying, "I'm doing a wee" he usually says, "We don't wee on floor" or, "Wee on potty."<br />So he's doing well! I'm not sure how we'll ever leave the house again as he's not even wearing trousers yet, but it is only Day Three!<br /><br />When I'm being rational, I think that if he really doesn't get it at all and it's a disaster we can always just try again in a few months. But the crucial difference between training a neurotypical child &amp; an autistic one is that with a NT child, you know that's it's highly likely they will be trained by the time they start school, and they want to be a big girl/boy, do what the other children are doing etc.<br />But for us, that isn't a given. He might not be trained by start of school. He might not be aware that other children aren't wearing nappies. He might not see any problem with being 12 and still not toilet trained, as he lacks the social awareness to realise these things. So it feels like there's this pressure to get it right, to toilet train him properly, because if I mess up, he may end up still not toilet trained as an adult. Like it's down to me to decide how to train him, how to respond to accidents and successes, how to make him realise that change isn't scary and bad. That if I don't think about the bathroom being too cold or too bright, if I forget to show him the visual cues, if I praise him too loudly and freak him out or don't praise enough and miss the opportunity, then he will leave secondary school still in nappies.<br />It probably sounds a bit melodramatic, but it's not that uncommon. I asked on an autism forum recently for advice and asked how old other people's kids were when trained. I got 6 replies- one said her two autistic children were both 5.5yrs when trained but still had problems years later; another's son is 6 and is trained for wees but not poos; another's was 3yrs 2 months; another's was 10 years old, and not night-trained until 13; another's took 5 years from the start of training to be fully trained; another's is 6 and still in nappies.<br /><br />So that's where we're at with potty training. I want it so badly for him- to be as independent as possible- and his autism means he's not going to instigate that independence so it's our job as parents to always be pushing him, and pushing his boundaries.<br /><br />In other news- we have decided on a school! We're hoping for him to get a place at an autism resource base that is within a mainstream school. It has a dedicated autism teacher and teaching assistants, who will know how to help him learn. He can spend as much time in the resource base as he needs, but also integrate into the mainstream class as much as he is able to cope with. It's a tiny school with only 3 classes which I think is perfect for him.<br />We've applied for his statement of special educational needs and will find out by Christmas whether or not they think he needs one. Fingers crossed!<br /><br />His speech is really coming on which is just fantastic. We have small sentences now such as, "I want more raisins please" or "I want go downstairs please."<br /><br />Think that's about it for now- I shall blog more soon!<br /><br />Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com3tag:blogger.com,1999:blog-1759228390927287296.post-55697760131497448512013-05-10T15:14:00.000+01:002013-05-10T15:14:29.191+01:00About six weeks ago, River said his first word- "Purple." I can't express how amazing it was to finally hear him say something after spending so long wondering if he'll ever say a single word. Of course, alongside that joy was a slight hesitance whether he would lose those words a few days/weeks/months later, but six weeks on &amp; he's just getting better and better, so I thought I'd share some videos!<br /><br />This first video is River's first word.<br /><br /><div class="separator" style="clear: both; text-align: center;"><iframe allowFullScreen='true' webkitallowfullscreen='true' mozallowfullscreen='true' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwOX_CZovfC7Uic2l37Zracxovd_h0wTn7nzyuH_mx_qiWCJ2Py2xp4nh2eUYZOLSPl1t5a6ROeOHG3S6bunA' class='b-hbp-video b-uploaded' FRAMEBORDER='0' /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div>And here is a video from this week, with River proudly labelling all the coloured splodges in his book! What's brilliant about this is that he is wanting me to respond each time and is actually taking notice of my response, and correcting his&nbsp;pronunciation. Fantastic!<br /><br /><div class="separator" style="clear: both; text-align: center;"><iframe allowFullScreen='true' webkitallowfullscreen='true' mozallowfullscreen='true' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dx0U8SYsbca1KoA_NUkYBEG6OMVF-bgBraqh27_L3Bkny7GvHbJF1AGUmDeH_GLbVtvpi5IMlR4BR_OUX26Bw' class='b-hbp-video b-uploaded' FRAMEBORDER='0' /></div><br /><br /><br />In the days before River's first word, his babbling really stepped up a notch- it was like he was speaking in his own language. I managed to get some of it on camera, and showed it to some friends who pointed out that in the video, River-who was drawing with a blue crayon at the time- says quite clearly, "I draw blue wiggle." The boy who had never said a recognisable word had come out with a whole sentence! (And I didn't even picked up on it!) He is a very smart little boy!<br /><br /><div class="separator" style="clear: both; text-align: center;"><span id="goog_1744472191"></span><span id="goog_1744472192"></span><br /></div><iframe allowFullScreen='true' webkitallowfullscreen='true' mozallowfullscreen='true' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dweEX8cP50m7gkuv6o98o_8xPZ3mfMG2j61pq5fK7MiAV2MhF1DLO84NZcRVkTXg6CUlD6G9wIBgV_k5G5ShA' class='b-hbp-video b-uploaded' FRAMEBORDER='0' /><br /><br />So now what we need to work on is using those words to actually communicate. After all, he could know 500 nouns, but if he can't learn to tell me that he needs a drink, or needs the toilet, they're not much use are they?<br />Still, the progress River has made in the last couple of months is massive. He's feeding himself with a spoon, walking to and from preschool without the pushchair, having hardly any meltdowns, coping with new spaces much better. So right now is a good phase!!Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com1tag:blogger.com,1999:blog-1759228390927287296.post-50641527908710012482013-03-21T00:16:00.001+00:002013-03-21T00:23:51.005+00:00Testing times.I wish I could always write about good things. I wish we were always moving forwards, progressing, developing. Unfortunately that isn't the reality of autism, and despite knowing this, every time we take a step backwards or have bad days/nights/weeks a feeling of panic and grief sweeps over &amp; knocks me off my feet.<br /><div>River recently learned animal noises. It was such a massive, massive step for him- to finally be making intentional noises. He could do cat, dog, mouse, bird, lion, snake, monkey, sheep, duck and hippo (don't ask.) We were soooo proud of him! It was our first inkling that him developing speech is very likely.&nbsp;</div><div><br /></div><div>Most of those animal noises have now gone. He can't/won't do them any more. I'm sure he's still got those noises stored in his brain somewhere, but he probably doesn't see the point in using them any more. But what does this mean for his future language development? What's to say he won't develop speech then decide not to use it?&nbsp;People say there's nothing worse than having no hope- which isn't actually true. What's worse is having hope then feeling like it's been taken away from you. I met with a speech therapy expert at a special school recently (I'll come onto that in a minute) and I was telling her all about his amazing animal noises &amp; how exciting it was, and she warned me that they may well disappear as it's very common for autistic children to gain skills then lose them again, then sometimes get them back again. But I didn't think it would happen with River. I shouldn't have been been so&nbsp;blasé about it.</div><div><br /></div><div>He also found a toy radio recently that was once a favourite. It has a small dial on it that you twist to hear different songs. Except this time, he couldn't twist it. He just couldn't work out how to do it. "Twist it River" I kept saying. "You know how to do it." But he had no idea. I kept trying to mould his fingers round the dial but they stayed floppy &amp; he didn't understand how to hold it tightly. I demonstrated a few times, then got him to try again. Still no clue. I started to panic, and could feel myself welling up. "Just turn it River! You do it. You know how to do this." But he didn't. Simple fine motor skills that are learnt at a much, much younger age- and something he could do effortlessly- were lost. You start wondering: Is he ever going to learn that again? How long will it take for him to learn it again? What other skills is he going to lose? Is it my fault for not making him practise it frequently enough? I knew I shouldn't have packed that toy away. What other skills should I make him practice regularly so he doesn't lose them?"</div><div>I needn't have worried- a couple of days practise &amp; he'd mastered it again.&nbsp;</div><div><br /></div><div>People say that when you're looking for a school to send your child to, whether they have additional needs or not, you just 'know' when you find the right one. A bit like buying a new house- you just get a feeling.</div><div>Most specialists &amp; therapists we've met have given the impression that they feel a mainstream school would be fine for River as long as the right support was in place. And despite not being convinced of this, I still thought that it would be our village primary school that would give me 'that' feeling. That I would think, "actually this would be perfect for our River."&nbsp;</div><div>Tim's auntie works at a special school in the next town along &amp; invited me to have a look round. The minute I walked in- even just in the reception area- I got 'that' feeling. I just knew River would love it instantly. So much thought had been put into the little things that make all the difference to many children with special needs- visual aids everywhere, stimulating/calming sensory equipment. We went into each class, and I just kept thinking, "River would love this. River would be absolutely fine here."&nbsp;</div><div>It was a bittersweet feeling though. I was looking at all of the wonderful, happy children &amp; the teachers &amp; assistants that were so obviously passionate about them in this wonderful school and thinking, my goodness. My child has special needs. He's not like most children, he needs more care, more love, more understanding. This is the environment he belongs in. When you set out to have a baby, you never imagine yourself visiting special schools for them. It feels like another difficult milestone.</div><div><br /></div><div>River can be such a loving child at times. When I pick him up from preschool I get the biggest smiles &amp; usually the biggest hugs. Sometimes, when I'm in the kitchen washing up or making tea, River will wander up to me and just lean on me until I bend down and cuddle him. It's lovely.</div><div>But there's another very challenging side to River. If he wants something that he can't have, he will respond with aggression. He will slap me in the face, pinch me, pull me, push me, pull my hair, try to drag me into a different room by my clothes. He will scream and scream and scream. Some would say the answer is to discipline him. Put him on the naughty step. But River has such delayed understanding, he wouldn't understand the concept of something like that. How do you discipline a child with the understanding of a 12 month old baby but with the strength, aggression and frustration of a nearly 3 year old?</div><div>He's aggression isn't just when he can't get his own way. If he hurts himself, he won't be comforted but instead just wants to hurt me. Maybe he thinks I caused it? Sometimes, there is no obvious reason for the aggression. It's very difficult to keep your cool when you're being hurt. Especially when you're at home all day coping with it. I've been known to yell at him when he's hurt me, before I can stop myself. I'm not a shouty parent and I feel so, so guilty when I lose it at him.</div><div><br /></div><div>I recently found out about Carer's Assessments. Anyone who is a carer can ask for a social worker to assess their needs and see if any extra support can be put in place for them. To do this, you have to create a record with Social Services. Which feels scary. In my mind, Social Services is there for vulnerable children, or children who are at risk. Of course this isn't true, but that's the stigma around Social Services. I felt like a failure when I called them. They asked me why I would like the assessment, what prompted me to call them. It's hard to ask for help &amp; admit you're struggling, it makes you feel weak. I feel like I'm letting River down, like I should be able to handle this.</div><div><br /></div><div>And that's the crucial part of it I think- I still think of myself as the same as any other parent of a 2 year old, &amp; I still think of River as a 'normal' 2 year old. And that if all the other mums can cope with their toddlers without help, why can't I? But I need to accept that we are not the same. River has very different needs to most 2 year olds and asking for help isn't a reflection on my parenting abilities. I have no one who says, "Let me take River off your hands for the day" or "Take the afternoon off, I'll watch River." And it's intense. Really intense.</div><div>So my mantra for the next few weeks is: Do not feel guilty for accepting help. Whether I'm ready to fully accept it or not, River has very special needs. That help is available because families like ours need it, so make the most of it.&nbsp;</div>Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com5tag:blogger.com,1999:blog-1759228390927287296.post-2445671551759466952013-02-19T21:13:00.000+00:002013-02-19T21:13:01.063+00:00Magic Moments.I can't speak for all autism parents, but certainly for Tim &amp; I and also other autism parents we speak to there are occasional moments in time that I like to call Magic Moments. They are usually a bolt from the blue, and are usually something that most families take completely for granted and you have come to accept won't ever happen with your child.<br />Last night we had a Magic Moment.<br />River woke at 1:45am screaming. He doesn't scream in the night often, but when he does it's impossible to resettle him. I left him for a few minutes to see if he'd settle before going in to him. I expected to go through the usual routine with him- giving him a cuddle whilst he carried on crying, then trying to put him back in his cot &amp; leaving the room whilst he went berserk, then waiting another 5 or 10 minutes to see if he'd resettle only for him to become beside himself &amp; get himself in a right state, then bring him into our room to watch a DVD quietly. After half an hour, we'd attempt to put him back in his cot which would usually end in a massive meltdown &amp; being brought back into our bed. He'd eventually fall asleep after a couple of hours.<br /><br />However, last night didn't play out like that.<br />I picked River up out of his cot &amp; he clung to me like a koala bear. I sat on his rocking chair cradling him, tummy to tummy, his head on my shoulder. Then all of a sudden, he stopped crying. His breathing calmed and he cuddled into me. For the first time since he was a newborn, he was soothed and emotionally comforted by a cuddle. I thought he'd fallen asleep, but his eyes were wide open but he was just staring at the ceiling, or into space, or occasionally at me. We sat there for an age in the dark, with only River's calm breath breaking the silence.<br />After about an hour I told him it was time to go in his cot- and he howled. So I kept him on my lap instead, and he calmed again instantly. My heart felt like it could burst. I was tired, my back was killing me &amp; I had a dead arm but I wanted to cradle him all night. Most parents get to take this emotional attachment for granted and at some stage will work on teaching their baby or toddler to self-settle. With River, it's the opposite- he has needed to be on his own to fall asleep for so long, and having this level of attachment is such a major step for him.<br />At 3am, I called to Tim through the monitor to bring the sofa bed in. Again, River will never normally fall asleep next to me unless he's been up half the night &amp; is watching a dvd in my bed. But after about half an hour of flapping around his room, he laid down with me and fell asleep. He woke around every hour &amp; cried out, but was instantly comforted by me pulling him in close to me &amp; having my arm over his chest.<br />I'm knackered today, but it was magical.<br />THAT'S what I like to call a Magic Moment.Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com2tag:blogger.com,1999:blog-1759228390927287296.post-31655175354505065442013-01-13T22:03:00.001+00:002013-01-13T22:35:36.262+00:00The ups & downs of having an autistic toddler.We've had a lovely weekend, and River has achieved so much! There have certainly been lots of highs. Here are some:<br /><b>-River ate jelly with his hands!!! </b>This is a massive deal. River is tactile defensive, meaning that he won't touch any food or play that is remotely sticky, slimy, soft or wet. He likes everything to be dry. So we try to expose him to as much sensory input as possible so that he will hopefully become a bit desensitised to it. Some days it will be giving him a yoghurt or mousse (which used to take a good few hours before he'd even dip his finger in it, but he's much more brave now!) and other times it will be through play-doh (which he still won't often touch) or moon dough, sand, shaving foam, multicoloured spaghetti, washing up bubbles- the list is endless!<br />So anyway, on Saturday I decided to be a bit radical and attempt jelly. I put it in his messy play table alongside some moon dough (a 'safer' option in River's mind!) and sprinkled raisins on the top as an incentive for him (he loves raisins!) However, not even raisins were going to persuade him to him to touch THAT disgusting stuff. He got quite cross when he tried to use my hand to retrieve the raisins for him and I wouldn't, as this video shows:<br /><div class="separator" style="clear: both; text-align: center;"><iframe allowFullScreen='true' webkitallowfullscreen='true' mozallowfullscreen='true' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxJKApde8fp1hb9zk_jAgc9kh7_01i8oBDK9b_pizKQ8GyVisQBpxw8GHNeIPYrO4wblG4d32lZgtzoEv02Jg' class='b-hbp-video b-uploaded' FRAMEBORDER='0' /></div><br /><br />I left it for a few hours, then decided drastic measures were needed- chocolate buttons. I sprinkled buttons on the jelly, poking some half in and others completely covered in jelly, then gave one to River to remind him how yummy they are. I could tell see the predicament in his face, but eventually- four hours after initially showing him the jelly-he tentatively reached in and pulled out a button! Half an hour or so later, he'd discovered that jelly was pretty scrummy and was eating it by the handfuls! He also ate some off a spoon (another challenge)<br /><div class="separator" style="clear: both; text-align: center;"><iframe allowFullScreen='true' webkitallowfullscreen='true' mozallowfullscreen='true' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyatWqUxFCR4n9ur5BjNEn-yMpKzdtD7t3Y6C82GLWAVZHat_bd__XrAzpE5oXTdMs-lkm6CkLsjOQ4aXCe' class='b-hbp-video b-uploaded' FRAMEBORDER='0' /></div><br /><br /><b>-We went to a public place without the buggy- River walked! </b>We visited a garden centre this morning- it has a pet shop inside &amp; River quite likes the guinea pigs, so the goal was for River to walk from the car to the pet shop &amp; back without getting overwhelmed and panicking. It went better than expected- after the pet store we went to see the fish, then he happily walked around outside whilst holding my hand the whole time. We then thought we'd see if he'd step into the cafe- didn't have much optimism- and he walked in happily, then sat on a grown-up chair and ate his pot of raisins very happily whilst Tim &amp; I had a coffee!!<br />It felt so 'normal' and relaxed. It was very noisy and busy but he wasn't at all fazed. He then walked back through the shop (we soon realised he's fine as long as he keeps moving, he doesn't understand the need to stand still to look at something!) and all the way back to the car. FAB!!!<br /><br /><b>-He walked to the shop!! </b>River has been so brilliant at walking to and from nursery (most of the time) but to get anywhere else in the village (the shop, park etc) you have to walk past nursery. I've been really nervous about walking anywhere other than nursery with him in case he associates walking with nursery and has a meltdown when we attempt to walk past it, as it's not his usual routine! However, today, he walked past it to go to the shop and it was fine. Such a relief!<br /><br />This is the stuff we have to focus on. This is the stuff that fills us with hope and makes us LOVE our little family and our family weekends. But for all the ups, there are lots of downs too. The simplest of tasks can be so difficult with a child like River in tow.<br /><br />One morning this week, we left the house to walk to preschool. He had his shoes &amp; coat on and I'd shown him his preschool PECS card, so he knew what we were doing. But as soon as we left, he spotted the neighbour's car. I think he must have thought it was our car, and wanted to go somewhere in it. To the average toddler, you'd tell them that it wasn't our car, and we had to walk to nursery. But River doesn't have enough understanding for this. He just completely melted down. He screamed &amp; screamed and refused to move. Luckily, the neighbour then came out and went to work in his car, so I could say to River "car gone" and he could see it wasn't an option any more. It took about 20 minutes to calm him down. Another neighbour was leaving his house and said, "Don't worry, that phase only last a few months!" I smiled politely but wanted to say, "Actually no, it may not. It may last for years. You may see us doing this when he's fifteen. I can't just think 'It's only a phase' like most parents, because it may not be." Eventually I persuaded him to look at the birds on the field with me. He then cuddled into me for ages and didn't want me to move, which was a really emotional moment for me as River feeling comforted from our cuddles isn't something we take for granted.<br />Then there's his reaction to other children. He cannot stand them. Whether it's a newborn baby or a six year old, whether it's at our house or at the park or at a pub lunch, he just wants to hurt them. It all boils down to fear and anxiety- he can't control their noises and movements, which he sees as unpredictable, so he wants to stop them. He tried to get to a newborn baby in a pram the other day, and the mother looked at my like I was the worst parent- although I'm getting a little more thick-skinned when things like that happen now. Preschool tell me he's fine with the children there- I guess he's had a long time to get used to them and their noise and is good at shutting them out. But at home and everywhere else, it's getting worse. It leaves you feeling very torn- I know I need to just keep inviting friends with children round to try &amp; build up his tolerance to it and build up his social skills, but it's very easy for 'autism mums' to become isolated- not wanting to invite friends round because a) you hate to see your child in such a highly anxious state, especially when they are becoming so lovely &amp; affectionate towards you the rest of the time, b) you hate to see other children being scared of your child and thinking badly of them, c) you worry you won't be able to grab hold of him in time &amp; he'll hurt the child badly and d) you worry that your friends will think you're not doing a good job, are dealing with it the wrong way.<br /><br />I also feel guilty for not being brimming with optimism every time River makes progress. I feel like I'm going to burst with pride every time he achieves something and want to scream about it from the rooftops, but there are professionals that seem to see it as a sign that he is going to be fine as he gets older- that he'll definitely be able to cope with mainstream schools, that he has a bright future. I feel guilty that I don't have the same level of positivity. Surely as his mum, I should be able to see what they see? Or maybe it's actually that it's my job to make them see what I see?<br />The thing is, even if River is a very bright child and very intelligent, he will always be autistic. He will always struggle with social and communication skills, as that is what autism is. As far as mainstream schools go, it doesn't matter how clever or not you are, how intelligent or not you are- as long as you have social and communication skills, you'll get on ok. So where does that leave River?<br />Which is the right option- do we send him to a mainstream school, and run the risk of him struggling with anxiety every day, having an unhappy child, having teachers that don't understand him &amp; his needs, but he gets used to being around people, learns to communicate and socialise and goes on to lead a perfectly 'normal' life?<br />Or do we send him to a special school that has teachers who are passionate about children with special needs, getting specialist help, he'd be in a smaller class, he could learn at his own pace, have access to so many special needs resources, sensory rooms/toys, but run the risk of him always seeing himself as 'different' and always seeing himself as separate from mainstream society, and not knowing how to get back into it?<br />He's currently in a mainstream preschool for 3 mornings a week- should I be pushing for him to be allowed to attend a special needs preschool for 1 or 2 half days a week? I think they'd probably say he's progressing just fine where he is so they wouldn't want to give him funding for the special preschool.<br /><br />And as I said to Tim earlier- he certainly is progressing so much lately, it's absolutely fabulous and we're so happy- BUT it's still a million miles away from his peers. He has just started making a "chg-chg-chg" noise when we ask him what trains do, which we're ecstatic about. But he's 2.5- he's about 12-18 months behind on that. Yes, he's finally started scribbling- and now won't stop!- but he's about 12 months behind on that too.<br />I don't normally ever compare him to his peers- it's pointless really- but when people imply he should go to a mainstream school, with his peers, it does draw a direct comparison. And I just can't picture it just now.<br /><br />So that's the latest from us- lots of really positive things, lots of progress, but when parenting an autistic toddler you can't ever really sit back and relax, because for every up, there's also a down.Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com5tag:blogger.com,1999:blog-1759228390927287296.post-43933043811436243032013-01-10T13:21:00.000+00:002013-01-10T13:21:04.960+00:00Our little artist!Here is River, taking his art very seriously. He spends around 90% of his day creating art, and is always very focused and serious.<br />I'm pretty sure he tries to say, "brown" at the very start of the clip, but it may be coincidence as he makes that noise a lot. Also, he's very good at picking the correct colours of crayons when asked in the second half of the clip.<br /><br /><div class="separator" style="clear: both; text-align: center;"><iframe allowFullScreen='true' webkitallowfullscreen='true' mozallowfullscreen='true' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzfX_PZy7Aoj1YD0NDtSab-DyDAxXGsLvFFBW2kdjK7BLD5B16hUgOek_msz7YPu4pIp85uOrPovcyHMOckBg' class='b-hbp-video b-uploaded' FRAMEBORDER='0' /></div><br /><br /><br />Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com4tag:blogger.com,1999:blog-1759228390927287296.post-6402667378379654692013-01-05T22:55:00.001+00:002013-01-05T22:55:17.724+00:00We need your help!!A few weeks ago, I found out about a fantastic charity called <a href="http://www.heartsandmindschallenge.org/" target="_blank">Hearts and Minds</a>, who help support families touched by autism in the UK &amp; Ireland. They are currently running an amazing "iPad Scheme" that we have joined.<br /><br />Basically, if we can collect 165 old mobile phones for them they will give River an iPad. How amazing is that?<br /><br />The benefits of iPads for autistic children have been widely reported. There are apps with recorded words &amp; messages than enable non-verbal children to have a voice. The tapping and sliding of the screen can be an easy concept to grasp for children that can't write and can improve fine motor skills. There are apps to help with academic learning such as letters, phonics, colours, shapes and numbers as well as apps to help with social skills and emotions.<br /><br />So this is where we need YOUR help- do you have any old phones hanging around? They don't have to be working and they don't need a sim card, but they do need a battery. We would be so, so grateful if you could either give them to us in person or post them to us (they don't need to be boxed, just wrapped in bubble wrap and brown paper would be fine.)<br /><br />An iPad would be such an amazing educational tool for River, but at £400 it just isn't in our budget. If you have any old phones to donate, please either get in touch via Facebook or email me at gemeversden@googlemail.com<br /><br />Thank you so much!!<br /><br />Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com2tag:blogger.com,1999:blog-1759228390927287296.post-51858287208776118292012-12-20T20:54:00.000+00:002012-12-20T21:12:27.335+00:00Autism: One Year On.So today marks exactly one year since I first realised River was autistic and I wrote this journal entry:<br /><br /><a href="http://aworldofspinning.blogspot.co.uk/2012/03/river-17-months.html" target="_blank">http://aworldofspinning.blogspot.co.uk/2012/03/river-17-months.html</a><br /><br />Last Christmas was a very difficult time for us.&nbsp;<span style="background-color: white; line-height: 17px;"><span style="font-family: inherit;">I remember on Christmas Eve, Tim went out to midnight mass and I stayed home &amp; watched the Westminster Abbey service. There were these angelic choir boys singing Christmas carols, &amp; I just thought, "will River ever be able to stand amongst other people and sing? Will he ever be in a Nativity?" &amp; it just tipped me over the edge. I just sobbed and sobbed, loudly, as if someone had died. I guess it felt like my hopes and dreams were dying to some extent.</span></span><br /><span style="background-color: white; line-height: 17px;"><span style="font-family: inherit;">Christmas Day was overshadowed by those feelings of despair. Tim &amp; I sat down to a lovely Christmas Dinner whilst River napped, and I sobbed all the way through it.</span></span><br /><span style="background-color: white; line-height: 17px;"><span style="font-family: inherit;"><br /></span></span><span style="background-color: white; line-height: 17px;"><span style="font-family: inherit;">But somehow, it gets easier. You learn to take one day at a time, because you have to. You can't keep fearing for the future or thinking what "could have been" if River wasn't autistic, because it would mean you miss out on precious moments. There are so many things about River that make my heart melt. Every time something on the TV scares him and he comes running to me for a cuddle, I could just cry. 6 months ago he wouldn't cuddle us for comfort, so we treasure every single one. I discovered the other day that River had scribbled on the kitchen walls with a crayon- and I was so proud! Two months ago, he couldn't hold a crayon. Now, his obsession is colouring. He gets through 10-20 sheets of paper each day (both sides) and I just want to keep them all!</span></span><br /><span style="background-color: white; line-height: 17px;"><span style="font-family: inherit;"><br /></span></span><span style="background-color: white; line-height: 17px;"><span style="font-family: inherit;">That despair isn't completely gone. It still punches me in the face when we're having a bad day and I think, "Is this what our future looks like?" And it chokes me.</span></span><br /><span style="background-color: white; line-height: 17px;"><span style="font-family: inherit;">The other day, River's preschool workers needed to chat to me for 5 minutes when I picked him up so we went into a little side room. We took some paper &amp; pencils for River, but after a minute or so he was dragging my hand to the door. By the time we left, he was hysterical. As far as River is concerned, when I turn up at nursery I put his coat on, get his bag &amp; take him home. The change in routine for a few minutes was too much for him to handle. I managed to get him outside &amp; he dropped to the floor crying, refusing to move. All attempts to get him to walk were futile. In the end, I had to carry him all the way home whilst he kicked and screamed, then eventually just sobbed into my neck.</span></span><br /><span style="background-color: white; line-height: 17px;"><span style="font-family: inherit;">Carrying him that far was really hard work, but just about possible. But what happens in a years' time? Or in five years? Or when he's fifteen?</span></span><br /><span style="background-color: white; line-height: 17px;"><span style="font-family: inherit;">Most parents will say their toddler has had a tantrum whilst out and refused to walk. The difference is: there is usually a logical reason why, you can usually say something that they understand to encourage them to walk, and most importantly- you know it won't last forever. Nobody can guarantee that for us.</span></span><br /><span style="background-color: white; line-height: 17px;"><span style="font-family: inherit;"><br /></span></span><span style="background-color: white; line-height: 17px;"><span style="font-family: inherit;">River is getting worse around children too. I don't know how he is in nursery- I gather he's ok- but if we go somewhere unfamiliar, or if we have people round, he always wants to hurt the children. With babies, he can't stand their squeals and general baby noises so tries to grab &amp; pull at their faces. With older children, he can't stand it if they make a noise or run past him- he wants to grab them and hurt them. Will this change?</span></span><br /><span style="background-color: white; line-height: 17px;"><span style="font-family: inherit;"><br /></span></span><span style="background-color: white; line-height: 17px;"><span style="font-family: inherit;">We've now reached an acceptance that we just can't know the answers- nobody does. All we can do is put all our efforts into helping him reach specific goals and hope for the best. He has surprised us a lot over this past year, and that's what we have to focus on.</span></span><br /><span style="background-color: white; line-height: 17px;"><span style="font-family: inherit;"><br /></span></span><span style="background-color: white; line-height: 17px;"><span style="font-family: inherit;">So this Christmas will be different.&nbsp;</span></span><span style="background-color: white; line-height: 17px;">We'll be hoping that maybe next year River will be saying to us, "Merry Christmas!!"&nbsp;</span><span style="background-color: white; font-family: inherit; line-height: 17px;">We will be celebrating how far River has come, and how far we have come as both parents and people. And we'll be thankful that we've been blessed with such a unique, special child when there are many people who struggle to have any.&nbsp;</span>Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com3tag:blogger.com,1999:blog-1759228390927287296.post-18569630394474000082012-12-07T15:06:00.001+00:002012-12-07T15:07:53.918+00:00Leaps and bounds.The past two or three weeks have been really lovely. River is making sooo much progress just lately, and it gives us so much hope. We've spent a long time thinking that River is really behind his peers in every skills area, but it turns out he's actually been absorbing so much information that he knows a lot more than we realised!<br />Here are a few good things from the last couple of weeks:<br /><ul><li><b>He knows his colours!</b>&nbsp;River has always been very interested in colours, &amp; will often pick up two or three objects that are the same but different colours (like two balls, two pieces of lego, or two building blocks) &amp; put them in your hand &amp; look at you to find out the name of the colour. Over &amp; over again! So I find myself saying, "Red ball. Green ball. Red ball. Blue ball. Green ball" for ages. But he never conveyed that he understood which colour was which. Then recently, he was pointing at different coloured cars in a book for me to label the colour when I switched it round and asked him, "River- where's the blue car?" And he pointed to the blue car. Tim &amp; I thought it was just a fluke. "Where's the red car?" He got it right again. He correctly pointed to blue, red, yellow, orange, pink, purple, white, green &amp; black in turn, twice. We were gobsmacked! There are lots of children his age who don't know their colours, so the thought of River being ahead of some of his peers is amazing!! It just goes to show that just because they don't appear to understand your language, they're taking it all in and absorbing so much.</li><li><b>He knows shapes! </b>He's always loved pointing at different shapes for me to label, but again I didn't realise he was taking it in as he would never point to something when requested. I only actually discovered that he knows shapes yesterday, when he got hold of one of Tim's Playstation controllers. He managed to correctly identify the circle, square, triangle and cross when asked!</li><li><b>He knows lots of animals! </b>River's never paid much attention to animals. But lately, whenever an animal comes on the TV he looks at me &amp; wants to know what it is. We were looking at a book about animals &amp; he pointed at loads of animals when I asked him to.</li><li><b>He understands that similar objects can mean the same thing. </b>It's a bit difficult to explain. With some autistic children, you could show them a photo of a labrador &amp; teach them that it was a dog. But if you showed them a picture of a jack russell, they wouldn't know it was a dog. As far as they're concerned, unless it's exactly the same as the dog in the photograph, it's not a dog. River thankfully doesn't have this. If he saw any photograph of a dog, or drawing, or toy- he knows it's a dog. This is a relief!</li><li><b>He scribbles! </b>River has always refused to use crayons, pencils, pens etc. If you tried to show him how to scribble, he would just flick them across the floor or spin them. But something has clicked- I think preschool have helped with this- and now he can't stop scribbling! He rarely goes 10 minutes without having a scribble with a crayon. It's such a milestone for him.</li><li><b>He's understanding us more.</b>&nbsp;His comprehension is still very delayed, but it's improved so much lately. He understands things that aren't just one-word nouns. If I say, "come sit down" or "scribble on the paper" (when he's using the floor!) he understands exactly what I'm saying.</li><li><b>He's responding to praise.</b>&nbsp;He's always been quite sensitive to praise- or the noise that usually goes with it- and would get very upset if we clapped or said, "Good boy!!" But lately, he loves it! He breaks out into a massive grin &amp; a chuckle every time you praise him. He also looks to other people in the room for their praise too, which is amazing.</li><li><b>He loves cuddles! </b>It used to sadden me so much that River wouldn't cuddle me. Every parent wants to comfort &amp; cuddle their child, and having your child not respond to this is awful. I wondered if River would ever want to be cuddled. These days, he loves them! If I'm sitting down, he'll often climb onto my lap for a cuddle. If I'm in the kitchen, he'll often come up to me with his muslins and try to snuggle into my legs until I crouch down for a cuddle. And the cuddles I get when I pick him up from preschool are just lovely.</li></ul>So as you can see, River's making lots of progress! For quite a while now, various therapists have said that they think River is really high-functioning, but it was hard to imagine it when he showed such a lack of understanding. We still don't like to get our hopes up too much as no one can guarantee how much River will develop over the next couple of years, but we're much more hopeful than we were a few weeks ago.Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com2tag:blogger.com,1999:blog-1759228390927287296.post-31494718102160008922012-11-16T19:35:00.002+00:002012-11-16T19:35:41.251+00:00Out & aboutI was so very proud of River today. We had a really hectic day, full of situations that I thought River would struggle with- and he managed brilliantly with every single one. I think he actually found our day less stressful than I did!<br /><br />Our day started with a carpet fitter arriving, to lay the carpet on our two flights of stairs. Usually, River gets very anxious when people come round, but he was totally relaxed at this strange man coming into our house! I think it was probably for a couple of reasons: River seems to really like men, and will stare at them and want to look at them! Also, the carpet fitter pretty much ignored River, whereas most people that come round want to talk to him &amp; interact with him. So River just ran up &amp; down the room, making noises, and occasionally glancing at the fitter.<br />Soon after he arrived, the fitter started hammering and bashing things- really, really loudly. River was fine! He got quite excited, running up &amp; down, but not distressed at all.<br />I had a doctor's appointment, so we had to get the bus into town. I haven't taken River on a bus for about a year- the idea of being trapped in a moving vehicle with a screaming autistic toddler whilst being stared at by 20 strangers really doesn't appeal to me! But River really surprised me. To start with, the bus was 30 minutes late. River didn't understand why we were stationary &amp; got a bit upset, but luckily I'd packed lots of breadsticks &amp; rice cakes to see us through. When we finally got on the bus, he was as good as gold! He stayed very quiet &amp; gazed out of the window.<br />We then arrived at the doctors &amp; got called straight in. Again, he just sat in his pushchair and munched on some apple!<br />We had a while to wait for our bus home &amp; we were running low on snacks, so I made the brave decision to venture into the nearby supermarket. River + supermarkets = disaster. Every time. But I thought we could nip in &amp; out super-quickly. But the strangest thing happened; River was really relaxed! So relaxed in fact that I was able to browse a couple of aisles and get a few bits &amp; bobs. Even queuing at the checkout didn't phase him!<br />I'm not sure if it was because we'd just walked along a busy road so he was a bit desensitised to the noise, or whether it was because he was in his buggy and therefore felt safe in his cocoon, instead of being in the trolley &amp; at eye-level to the other shoppers. Or it may have been because it was in the afternoon &amp; he may have been a bit sleepy. Whatever it was, it was lovely!!<br />We then got a very packed bus home. River's pushchair had to be parked right next to a newborn baby who was having a scream. River detests babies, mainly the noise of them. He glanced at me a couple of times but didn't seem particularly distressed by it. He quite liked holding onto my finger for the journey- I like to think that he was getting some comfort from it.<br /><br />So yes, a very successful day. So many things that would've caused a meltdown a short while ago- a stranger coming round, loud hammering, having to wait for a bus, having to go on a bus, going to the doctors, going to the supermarket, being near a screaming newborn....but he did so very well. And I'm so very proud of him! XxRivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com2tag:blogger.com,1999:blog-1759228390927287296.post-63201709917885389182012-11-08T20:34:00.000+00:002012-11-08T20:34:01.121+00:00More progress- caught on video!Just thought I'd share our joy about the progress River is making!<br /><br />We've been working hard on teaching River to exchange photo cards in order to communicate what he wants. This is the foundation if learning PECS (Picture Exchange Communication System.) I managed to get a wee video of him exchanging a photo of some raisins in exchange for raisins. It's really important when doing this that you aren't replacing sppech with pictures, but using them alongside one another, so you'll notice that every time he gives me the card I say either, "More raisins" or "I want raisins" so that I'm modelling the correct speech.<br />He was lying on the floor watching tv, still in his Grobag, so his concentration obviously isn't great!<br /><br /><div class="separator" style="clear: both; text-align: center;"><iframe allowFullScreen='true' webkitallowfullscreen='true' mozallowfullscreen='true' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dz8gk40xxvFUe9RJP8bI4h2NPScsiMSmjs3sy9PoykFhChDUU7RaGriGbCnffmK1OFU8piZpmr5xnr2gTi2Kg' class='b-hbp-video b-uploaded' FRAMEBORDER='0' /></div><br /><br />Next up- River got hold of my toffee-flavoured yoghurt pot today &amp; after some initial trepidation was eventually brave enough to dip his fingers in &amp; dab a bit on his lips. After a while, he not only ate some yoghurt directly off the spoon instead of using his fingers (which is very rare!) but he also held the spoon by the handle and ate the yoghurt off it- all by himself!! He has never fed himself with a spoon before, so I grabbed my phone &amp; made sure I got it on video (sorry it's not very good, it was hard to load spoons of yoghurt whilst filming! He'd just woken up from a nap so looks a bit tired.)<br /><br /><div class="separator" style="clear: both; text-align: center;"><iframe allowFullScreen='true' webkitallowfullscreen='true' mozallowfullscreen='true' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dz37yhMKiz1vrrPv4q7M1Ve5rWT4htrkwp8MQK-m226WdFyHm6LG0ekiM8pB8hOjeHYetH5wZ5OvC5fvu_MoA' class='b-hbp-video b-uploaded' FRAMEBORDER='0' /></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><br />Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com2tag:blogger.com,1999:blog-1759228390927287296.post-38549819831425463432012-10-31T15:40:00.000+00:002012-10-31T15:40:00.040+00:00GUEST BLOG: A Daddy's PerspectiveSo Tim asked me today if he could write a piece on the blog, to give a Daddy's take on things.<br /><br />So here it is.<br /><br /><br /><div class="MsoNormal"><u><span lang="EN-US"><span style="font-family: Times, Times New Roman, serif;"><i>A Daddy’s perspective<o:p></o:p></i></span></span></u></div><div class="MsoNormal"><span lang="EN-US"><span style="font-family: Times, Times New Roman, serif;"><i>It’s an interesting place to be in, to be reading a blog about your own Son.&nbsp; The last year has been such a rollercoaster ride for this little family and to have the trip available to muse over in a blog has been invaluable to me personally. It is easy to forget how far we’ve come and miss the small stuff. But having the blog gives me time to reflect on the journey we have begun. A time to stop and smell the flowers if you like.</i></span></span></div><div class="MsoNormal"><span lang="EN-US"><span style="font-family: Times, Times New Roman, serif;"><i>I wish I could paint a picture with words the way that Gem does. Gems blog has the ability to transport you right into the heart of our family, quite often I have been moved to tears or laughed out loud at something funny River has done and Gem has recaptured here for everyone to share with us. I think my blog entry will be clumsy and not as well put together as my gorgeous fiancée. So please forgive me if this entry isn’t up to the usual standard!</i></span></span></div><div class="MsoNormal"><span lang="EN-US"><span style="font-family: Times, Times New Roman, serif;"><i>I came across this article this morning and it moved me more than I imagined it could.</i></span></span></div><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-lkjmmuJ0_zw/UJFGAgcCItI/AAAAAAAAALc/YAJywc3f-Wo/s1600/Halloween.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="306" src="http://4.bp.blogspot.com/-lkjmmuJ0_zw/UJFGAgcCItI/AAAAAAAAALc/YAJywc3f-Wo/s320/Halloween.png" width="320" /></a></div><div class="MsoNormal"><span lang="EN-US"><span style="font-family: Times, Times New Roman, serif;"><i><br /></i></span></span></div><div class="MsoNormal"><!--[if gte vml 1]><v:shapetype id="_x0000_t75" coordsize="21600,21600" o:spt="75" o:preferrelative="t" path="m@4@5l@4@11@9@11@9@5xe" filled="f" stroked="f"> <v:stroke joinstyle="miter"/> <v:formulas> <v:f eqn="if lineDrawn pixelLineWidth 0"/> <v:f eqn="sum @0 1 0"/> <v:f eqn="sum 0 0 @1"/> <v:f eqn="prod @2 1 2"/> <v:f eqn="prod @3 21600 pixelWidth"/> <v:f eqn="prod @3 21600 pixelHeight"/> <v:f eqn="sum @0 0 1"/> <v:f eqn="prod @6 1 2"/> <v:f eqn="prod @7 21600 pixelWidth"/> <v:f eqn="sum @8 21600 0"/> <v:f eqn="prod @7 21600 pixelHeight"/> <v:f eqn="sum @10 21600 0"/> </v:formulas> <v:path o:extrusionok="f" gradientshapeok="t" o:connecttype="rect"/> <o:lock v:ext="edit" aspectratio="t"/></v:shapetype><v:shape id="Picture_x0020_1" o:spid="_x0000_i1025" type="#_x0000_t75" style='width:5in;height:345pt;visibility:visible;mso-wrap-style:square'> <v:imagedata src="file:///C:\Users\Gem\AppData\Local\Temp\msohtmlclip1\01\clip_image001.jpg" o:title=" facebook_-1720413886"/></v:shape><![endif]--><!--[if !vml]--><span style="font-family: Times, Times New Roman, serif;"><i><!--[endif]--></i></span></div><div class="MsoNormal"><span lang="EN-US"><span style="font-family: Times, Times New Roman, serif;"><i>I can just imagine River in this situation or others similar, wanting all the sweets because he would need to separate them into piles and want to know the different colours.&nbsp; To others he would seem greedy, slow, backward or selfish, but we all know different because we all have taken the time to know River. To be honest this breaks my heart, I hate the thought of River being misunderstood at a first glance. I want everyone to see and appreciate how amazing he really is and to tell him so. Through knowing him I can tell that he is going to be such a sensitive soul. Gem and I will be standing with him for as long as we can but it is a worry that we might not always be there, and then who will? Who will be able to tell the world what an outstanding individual he is if we aren’t able to? Who will be able to take the time to get to know him when the world is so fast paced and busy and people all too frequently need to fit into slots that others dictate?</i></span></span></div><div class="MsoNormal"><span lang="EN-US"><span style="font-family: Times, Times New Roman, serif;"><i>I work office hours during the week, River sleeps well so I don’t get to see him in the morning although he is often chatting and giggling to himself by the time I set off. (I would love to know what he’s thinking about at these times). By the time I get home in the evening, River is usually motoring up and down the living room at 100mph, there will be balloons, balls, picture cards and books scattered everywhere, different piles of similar toys will be stored under cushions. Normally in one of the chairs will be a family of ducks, in another will be a pile of spoons, another favourite at the moment is disposable cameras. Once River has found one of his toys he will set himself a personal mission to find the rest of the set. River will notice my arrival at some point and if I’m lucky he might be able to pause for a second to acknowledge me being there before whizzing off again with a shout and a puff of smoke. Gem and I were comparing him to the Tasmanian Devil cartoon character the other day, I’m sure you can see why.</i></span></span></div><div class="MsoNormal"><span lang="EN-US"><span style="font-family: Times, Times New Roman, serif;"><i>The weekends are our time to play together as a family. It mainly used to involve considerable amounts of time at the motorway bridge watching the traffic go by; another favourite would be simply watching cars parking in a car park. But as time passes River is noticing more of the world around him. Earlier this week we took him to a garden centre to look at the brightly coloured fish. What captured his attention more than anything this visit was a guinea pig. It doesn’t sound much but trust me this is massive, a few months ago he wouldn’t even have noticed an animal if you put him nose to nose with one.</i></span></span></div><div class="MsoNormal"><span lang="EN-US"><span style="font-family: Times, Times New Roman, serif;"><i>&nbsp;To me this is what it’s all about; it’s savouring every small step on the journey, remembering and recording it in a blog for ourselves and for our friends and family to share. The path we’re walking on might have a different destination but that doesn’t mean it has to be any less pretty. We share this blog because we want to share River with you. We want the world to learn how blessed we are that we’re his parents and how much richer our world is when we get to amble it at an albeit slower pace with a boy named River.</i></span></span></div>Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com3tag:blogger.com,1999:blog-1759228390927287296.post-13529663945883990362012-10-08T15:28:00.002+01:002012-10-08T15:32:08.377+01:00Lots of good and a little bit of bad.So today was River's first ever full session at preschool without me! It went brilliantly. I snuck out when he wasn't looking and was free! Such an amazing feeling. I think people expect you to be a bit sad when leaving your child in preschool for the first time, but I was super happy! I have complete trust and faith in River's 1:1 support and in his preschool, and having some time off has been a long time coming!<br /><br />I was able to do some many simple things with ease that I normally can't do- like hanging the washing out upstairs. I can't do that during River's waking hours as I can't leave him unattended for a second, and I can't take him with me as he assocaites the top floor with going to bed so would go berserk. Plus, I can't carry him and a washing basket up the stairs! And I made some chicken burgers without having to wash raw chicken off my hands every two seconds to get River a snack, turn the tv over, read his book etc.<br /><br />Bliss!<br /><br />He seemed very happy when I picked him up and had had a brilliant morning. So all in all, a great success.<br /><br />Although I'm currently feeling a bit stressed. One of the reasons for wanting an early diagnosis was to get a place on the EarlyBird course. The EarlyBird course is a course ran by the National Autistic Society all over the country for parents whose child has received a confirmed Autism diagnosis before the age of 4. There are 6 families on each programme, so it's a brilliant way of meeting other parents in your position. It's once a week for 3 months, sometimes in a training centre &amp; sometimes as a home visit.<br /><br />Since getting our diagnosis, I've been asking for a place on this course. Our paediatrician said we should definitely go on it &amp; told us to speak to the Autism Outreach Team (SAOT) who organise it. So I spoke to them today, who've said there won't be any EarlyBird courses running in the area for the foreseeable future, as there aren't enough families getting a diagnosis before 4. They've said we basically have to wait until River turns 4 and then go on the EarlyBird Plus course (for ages 4+.)<br />So I called up the National Autistic Society and asked them where the nearest course was to us. They said Weston-Super-Mare. So I called the WSM branch- who said we couldn't go on their course because we weren't under their catchment! I asked whether getting a letter from our paediatrician would allow us to go on it and they said, "Well you can try, but you're not even close to our area so I doubt it."<br /><br />It makes me sooooo, sooooo cross that we pushed and pushed to get an early diagnosis, because early intervention is so important, and yet we're then told to wait another 2 years! We are very fortunate to be getting weekly Portage sessions and have seen other therapists, but we really wanted to go on the EarlyBird course.<br />It annoys me that we are missing out on help &amp; support because children aren't being diagnosed before 4. And the reason they aren't being diagnosed is because health visitors, doctors and other healthcare professionals are wanting to "wait and see" and not "label" a child too young. In my opinion, there is no reason to delay diagnosing if all the signs are there.<br /><br />What this has made me realise is that just because a service is "meant" to be available, doesn't mean it will be. And just because we're told certain help will be available for River, it doesn't mean it will be. And this is why we want him to have a statement. He's currently getting a lot of support- weekly Portage, 2yr old funding for nursery, 1:1 support- but if for some reason the Local Authority were making cuts and wanted to stop it all, there's nothing we could do. Whereas if he has a statement, it is a legal document and the Local Authority is&nbsp;obliged by law to stick to it.<br />So I guess that's the next battle really. I'm going to attempt to approach this slightly more relaxed than previous battles though. I'm going to *try* and not let it overshadow everything else in life. And rather than try to do it all on our own, I'm going to let people help us a bit more too- there are a couple of good organisations that are there specifically for this sort of thing- Parent Partnershi<span style="font-family: inherit;">p (<span style="background-color: white; line-height: 25.600000381469727px;">information advice and support to parents and carers of children and young people with special educational needs) and also IPSEA <span style="font-family: inherit;">(</span></span></span><span style="background-color: white; line-height: 21.83333396911621px;"><span style="font-family: inherit;">a national charity providing free legally based advice to families who have children with special educational needs.)</span></span><br /><span style="background-color: white; line-height: 21.83333396911621px;"><span style="font-family: inherit;"><br /></span></span><span style="background-color: white; line-height: 21.83333396911621px;"><span style="font-family: inherit;">So overall, I'm feeling good- sooo pleased River is settled at preschool and I get a break! Massive milestone for us. Also a bit grumpy that the support isn't there for us when it should be and that we have another struggle on our hands- BUT feeling like we're not doing it on our own now, that there are people whose job it is to help us which is comforting.</span></span><br /><br />Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com4tag:blogger.com,1999:blog-1759228390927287296.post-70667074401251236082012-10-04T15:30:00.000+01:002012-10-04T15:30:49.950+01:00Feeling good!Well River has been at preschool for four weeks now, so it seems like a good time to write a new blog entry.<br /><br />Things are going very well! River is managing the full three-hour session, which has surprised everybody as we all thought he would need a much more gradual introductory period and would maybe manage half an hour for a couple of weeks, then build up to an hour etc- but almost from the very beginning he has lasted the whole time. He has also bonded really well with his 1:1 support, who is really lovely &amp; definitely the best person for River. He's managing to sit at the table with the other kids for snack time, and hasn't felt the need to grab any other kid's faces for a while!<br />There are definitely things that have been crucial in this happening.<br />Firstly, I have been by his side for the first 5 or 6 sessions. During the completely alien experience of being a preschool, he always knew he was safe because I was right there. This is soooo massively important to children like River. This has meant that he has managed to get to know his 1:1 support whilst still having me in the background. Getting to know new grown-ups is a big deal for River; most children will recognise a friendly face, someone smiling at them, saying nice things to them and speaking in a calm &amp; caring tone. Whereas River doesn't understand facial expressions, he doesn't understand much language and he doesn't understand tone of voice- which makes new people quite scary for him. So having me there has helped tremendously with this process.<br />Secondly, the fact that he has 1:1 support is vital. All these crazy kids being noisy and running around, and yet in the midst of it is one person who is always by his side, always encouraging him to interact, and who has now learnt his likes &amp; dislikes, his limits, &amp; how to prevent certain situations occuring. I dread to think what would happen if he didn't have that support.<br />At snack time, the children would normally pass a plate of fruit round &amp; take one piece at a time. Whereas the only way River will sit at the table is if he has a plate of fruit in front of him to focus on. So that's what he has. Just adapting such a simple thing can make all the difference.<br />When we first started, we arrived 15 mins late and came in through the side door which is in the playground, so River could spend time in the playground and come in when he felt ready. Now, we're managing to come in through the main entrance. We still come in later than everyone else so that all the parents have gone and the kids are settled (in fact, today we were really early &amp; arrived t the same time as everyone else &amp; River had a minor freak-out) but we're doing well.<br />I then spent a session sitting in the corner of the hall, so that I was accessible if River needed me but it meant that he was more likely to interact with is 1:1 and work on his rapport with her instead of always looking to me. Then I spent a couple of sessions sitting in the kitchen out of sight, and even popped out to the shop- and he didn't even notice I was gone!<br />As from next week, I'm going to be leaving him for the whole session. I feel completely confident that he will be absolutely fine, and I am so very excited to finally have some time to myself!!<br /><br />In other news, we've started our weekly Portage sessions. Our Portage worker is worth her weight in gold, really lovely and knows exactly what she's doing, very positive and knows how to push River's boundaries without pushing him too far. She also gives me lots of new ideas for games and activities.<br /><br />We're also thinking of stopping the gluten free &amp; dairy free diet. River has definitely made some progress since being on the diet, but not anywhere near the same level that others have found. The progress may be down to the diet, or it may be because he's just naturally developing, plus he's now having Portage &amp; preschool and I spend a lot of time playing with him. I think the only way of knowing is to reintroduce these foods and see if he stops progressing or regresses. So now I just need to decide whether to stick it out a bit longer, reintroduce just dairy, just gluten, or both.<br /><br />So overall, things are going very well! I'm making a really&nbsp;concious to not dwell on the future and the "what-ifs" and focus on the here &amp; now, celebrating the achievements each day.<br /><br />Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com2tag:blogger.com,1999:blog-1759228390927287296.post-56951787104049660812012-09-11T00:15:00.001+01:002012-09-11T00:15:42.682+01:00Everyday stresses.I haven't written a blog for a while. I think I was waiting for some positive to happen so I wouldn't have to write something negative. But I guess that's missing the point of the blog- writing an account of our autism journey- if I leave out the bad bits.<br />The thing with autism is that nothing particularly bad needs to happen to make you feel sick with dread, worry &amp; anxiety. There are constantly a million worries simmering away in the background, and no matter how many times people tell you- and you tell yourself- that there's no point worrying about the unknown, you &nbsp; &nbsp;can't switch it off.<br />Because when you have children, there are certain things that you think are a given. And when they aren't a given any more, you worry. A lot.<br />River started preschool last week. I'm going to be with him for several weeks/months, he has a 1:1 preschool worker, and there are lots of allowances made for him. He did much better than I thought he would, which was great. But he's still a million miles away from all the other children.<br />We arrive 15 minutes later than everyone else so he isn't upset by the disruption. We don't use the main entrance, we use the side entrance which is through the playground so that River can spend time in the playground first and come indoors when he feels ready. He's allowed to graze on carrots &amp; rice cakes whenever he likes as food is a comfort to him. He doesn't have to join in with Circle Time- he doesn't even seem aware that it's happening. He doesn't have Snack Time with everyone else. He has a side room that's just for him, that he can go to if it gets too much. He runs up &amp; down the hall flapping, in his own little world. If he's outside &amp; the other children come outside, he gets upset so comes back in. And when he's had enough, he can lead me to the pushchair and go home.<br />He needs supervision constantly. He's had two sessions at preschool, and has so far: tried to eat a stone, tried to eat some playdough that he found outdoors, tried to casually step off the climbing frame (a two or three foot drop,) pushed two children that weren't even in his personal space- he just didn't want them to be there- and scratched a child's face making her cry (I don't think he wanted to hurt her at all, I think he just wanted to grab both sides of her face and squeeze to see what it felt like- I think it was a sensory thing. He also had a big meltdown, throwing himself about, screaming, and staring into my eyes as if to say, "I don't understand what's happening mummy, make me feel calm &amp; safe again."<br />It's bound to take time for him to settle. Going to preschool is massive for any child, so some of these things will probably get better. But- what if they don't? These allowances won't be made for him at primary school. People have said that watching other 'normal' children may encourage him to socialise &amp; communicate better, like it will 'rub off' on him. Somebody described this wonderfully on a special needs forum recently, saying, "forcing an ASD child to socialise is somewhat like saying to someone who cannot walk easily 'go on, you CAN walk really....' " which sums it up pretty well.<br />So naturally, I worry about schooling. I say I, and not we, because Tim is so much better on concentrating on the present &amp; not the future than I am. I worry whether or not he'll tolerate the mainstream village primary school- or indeed any mainstream school. I feel like I'm meant to say that I'm hopeful he'll be fine in mainstream, that I think he will, that that is what I am planning for. But it isn't. Hand on my heart, I do not think full time mainstream education is going to be right for him. The choice may be very obvious in a couple of years anyway- he may not develop speech &amp; may remain developmentally delayed &amp; therefore need a special needs school. But even if he develops normal speech, is developmentally on par with his peers or even especially bright, he is still lacking the fundamentals of mainstream school- the ability to understand and communicate with other people. It's the whole square peg in a round hole- you're just going to damage the peg. I'm not completely writing off mainstream schooling- River's only two, who knows what the future holds- but I really think that he won't cope with full-time mainstream school.<br />So what are the other options? A special needs school is the first thing that comes to mind. Tim has a lovely auntie who is a special needs teacher for a local special school, and from what she tells me it sounds wonderful. Then there's the option of a mainstream school with an autism unit attached to it- sounds perfect on paper. But I've been told they're not as great as they sound- it would basically be all the bad things about mainstream school without the specialist support from experienced teachers. Then there's homeschooling- now I love River dearly, but after 2 years of being with him every day apart from maybe 3 or 4, I need a break! But if none of the other options were working then I'd consider it.<br />The other option I've read about on forums is 'flexischooling.' It's a cross between homeschooling &amp; mainstream school- a popular option for children that can't manage full-time mainstream, so they may do 3 or 4 days at school &amp; a day or two being educated at home, or if they can't handle a whole day at school then maybe mornings at school &amp; afternoons home educated. Of course, I'd encourage socialising but in a non-pressurized sort of way ie things that River was interesting in, such as chess club, bowling or whatever.<br /><br />So yes, that's a big worry &amp; a big stress. And it's on my mind all the time.<br /><br />Next stress: talking. I JUST WANT RIVER TO TALK. If I had a pound for every time someone said to me, "he'll talk when he's ready" or "my nephew/cousin/neighbour/Einstein didn't talk until they were five, he'll get there" I'd be pretty rich. HE MAY NOT GET THERE. Not all autistic people can talk. That's the difference between River and someone's nephew/cousin etc- a late talker is very different to someone on the spectrum. I want him to talk. He has so much going on in his head, you can almost see the cogs turning- and I wish he could express his thoughts. I recently bought him a speech &amp; language DVD that he loves. I recommended it to the mums on an autism forum I'm on, and several of the kids have started saying a few words or mimicking the pretend play that's on the DVD- River hasn't. It's so frustrating.<br /><br />Massive, massive stress.<br /><br />Then there are all the millions of little developmental things that he can't do. He can't feed himself with a spoon or fork, can't make marks on paper with crayons, doesn't clap, doesn't wave, doesn't point to share interest, no pretend play etc. etc. etc.<br /><br />I just want to help him. I want to TEACH him. We've worked really hard at building a relationship with him, and it's lovely to see. There are several games that he likes playing with us, his eye contact is great, he likes to climb on us for cuddles, and his interaction with us is just lovely.<br />But how do we teach him to interact with others? He hates people coming into our house. He dislikes other children. What can we do to help this?<br /><br />Of course, it isn't the only stress in our lives. We have other big worries &amp; stresses to deal with, we have the usual things like bills &amp; housework to keep on top of. The world just seems awfully unfair sometimes and can make you question why you deserve the hardships. But then again, everyone has hardships. No one deserves them. Some people's hardships are much worse than ours.<br /><br />Sigh. Will try to make the next blog a happier one!Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com3tag:blogger.com,1999:blog-1759228390927287296.post-59459106773827866152012-08-11T16:27:00.001+01:002012-10-20T17:06:25.773+01:00Therapies and interventions.I apologise in advance for the super-long blog post. My brain is like a tornado lately, sucking up any information related to autism and constantly spinning it around in my head. I need to write some of it down before I burst.<br /><br />I've just finished reading a book called George and Sam, by Charlotte Moore. I read an <a href="http://www.guardian.co.uk/lifeandstyle/2012/mar/24/charlotte-moore-autistic-sons" target="_blank">article</a> written by her in the Guardian a few months ago which touched me, and recently a friend recommended her book. It's affected me more than I thought it would- in a good way really. Charlotte has three sons, the eldest two-George and Sam- are severely autistic. I've read many,many books, blogs and articles that talk about the joy of autistic children, their amazing qualities, or their miraculous 'recoveries.' But what about the parents? What is day-to-day life like for them? Charlotte's book tells you. She doesn't soften it up, make it seem rosy. She's open and honest, which is what I like. According to the National Autistic Society, only 5-10% of children with autism will go on to live independent lives as adults. That's shockingly low.<br />River is only just two, so he may start talking next week, next year, when he's four. He may make fantastic progress in pre-school in September, go on to a mainstream school and be high-functioning. BUT- I can't pin my hopes on that. There's nothing to suggest he won't be high-functioning, but there's also nothing to suggest he won't be low-functioning. If I pin my hopes on him being very able and 'mild' then what will happen if he doesn't learn to speak, can't ever look after himself, needs 24/7 supervision for the rest of his life? I'd then be faced with that realisation a few years down the line, and will be heartbroken all over again.<br />So I think it's important to read about children who are severely autistic to prepare myself. There may be some people reading this thinking, "River isn't severely autistic. He looks so switched on &amp; alert."<br /><br />Charlotte's son George knew over 40 words by the age of 15 months, he'd clap, he'd wave. By 16 months, when Charlotte paused during a story, George could fill in the word. This was the same for over FIFTY books.By his second birthday, he knew the whole alphabet and could form a few&nbsp;words with fridge magnet letters.<br />Charlotte's son Sam, at 20 months: had very good speech, loved books, liked cuddly toys, loved to dance, fed himself with a spoon, could take his own t-shirt off, liked meeting other children, could point, knew some letters.<br />Yet they are both profoundly autistic.<br /><br />Charlotte has tried many different therapies, as most ASD parents do. There are two, however, that she thinks had the biggest effect on her boys. These are ABA therapy, and the GFCF (gluten-free casein-free) diet.<br /><br /><u>GFCF diet.</u><br />I first heard about this diet ages ago, and to be honest I thought it was a load of rubbish. How could changing some things from River's diet change a neurological condition? Isn't it a bit daft to cut out two major &nbsp;food groups, when ASD kids are notoriously fussy eaters as it is? Is it just clutching at straws? There is some &nbsp;good information&nbsp;<a href="http://www.tacanow.org/family-resources/an-essential-handout-for-teachers-aides/" target="_blank">here</a>&nbsp;and also&nbsp;<a href="http://www.facebook.com/notes/how-to-implement-a-gluten-casein-free-gfcf-diet-for-your-autistic-child/frequently-asked-questions-about-dietary-intervention-for-the-treatment-of-autis/121042404583393" target="_blank">here</a>. I asked our paediatrician about it who said that unless River has bowel issues it's not worth doing. So I dismissed it.<br />However, two things have since changed my mind. Firstly, the more Tim &amp; I thought about it, the more we've realised that perhaps River does have bowel issues- he often gets mildly constipated, which I didn't think was a big issue- but he eats so much fruit, and I think if he didn't eat all the fruit he'd be a lot worse.<br />Secondly, I have a friend with a little girl a few months older than River, who is currently awaiting diagnosis. She's non-verbal, and has no bowel issues at all. My friend decided to try her on the GFCF diet, mainly because there wasn't a reason not too. A week later, she said her first word. Within a month, she had 4 or 5 words, lots of lovely interaction, eye contact. Maybe it was a coincidence and it would've happened without the diet- just as River's pointing did. Or maybe, it was the diet.<br />So what do we have to lose? Yes it costs more, but we're not talking thousands. It's a lot of time &amp; effort, but if it helps, why not try it? Just for a few months? If we didn't try it, we'd always wonder, "What if?"<br />Casein is a milk protein, which means no milk, butter, cheese, chocolate, or anything containing them. That includes some (but not all): mayonnaise, crisps, sausages, breaded chicken, ham, biscuits, cake.<br />Gluten is a protein found in wheat, oats, barley &amp; rye. So that means no pasta, (he didn't eat that anyway) bread, cereal, breadsticks, ryvita, crackers, cake, biscuits, sausages, anything containing flour.<br /><br /><u>ABA therapy.</u><br />It's funny that two interventions that I thought were daft are now the two I'm interested in. ABA therapy has been successfully used with autistic children a lot, especially in America. I read about it and watched clips on youtube, and took an instant dislike to it for a couple of reasons.<br />1. It's suggested that it's done for 30-40 hours a week. That's like a full-time job. For a TODDLER. That struck me as wrong. Children twice his age are only just beginning to do 25-30 hours at school. I didn't want to impose such intensive work on him so young.<br />2. So I watched the videos on youtube and quickly realised that the toddler/child was always sat at a toddler table facing the ABA tutor. I read up about it, and it seems it's the norm. This made me LOL. River, sit at a little table? Actually sit, on a seat? For more than 2 seconds? Good luck with that.<br />3. I've heard several people- including it's fans- liken it to dog training. It's all about short, bitesize instructions and big rewards for every completed task. River isn't a dog, he's a beautiful little person.<br /><u>So why have I changed my mind?</u><br />1. Charlotte Moore's book (told you it had a big impact.) Some things she says about it: "If- Heaven forbid- I should find myself with an autistic two-year-old all over again, I would embark on an intensive ABA programme in place of nursery school. I do believe it to be the best way of maximising the autistic child's capacity for learning." "Speaking entirely from my own experience, if I had my time with the boys again, I would put them on the GFCF diet, and start an ABA programme as early as possible."<br />2. I came across this ABA-based website, and watched&nbsp;<a href="http://www.rethinkautism.com/parents/SampleLessons.aspx" target="_blank">these</a>. I don't think ABA is as strict as I'd imagined.<br />3. The whole dog training thing- River responds best to one or two word sentences- like "River, eat? Eat? Good boy!" Many people would say this is talking to him like a dog- but that's just the way he learns. As they say, if they can learn the way you teach, then teach the way they learn.<br /><br />So the biggest issue of all: Money. My word, it's expensive. In America, ABA therapy is so common for autistic children that it's covered by insurance. Unfortunately, there is no free or cheap ABA available. It costs at least £10,000 a year to run an ABA programme for your child. Most ABA tutors earn £8 an hour, the team leaders £10-£15 an hour and supervisors £15-£25 an hour. According to PEACH (Parents for the Early intervention of Autism in CHildren): "Currently, more than 100 Local Authorities in England &amp; Wales are funding ABA programmes. Many have not chosen to fund the programmes, but do so because parents have fought successfully for ABA at Special Educational Needs Tribunal."<br />So there are two ways to ease the cost of ABA. The first is to apply to the Local Authority, and more than likely ended up going to tribunal. The second is to appeal to kind relatives, friends, the local community, maybe psychology students, to be tutors. He would need maybe three or four, who would need to commit to &nbsp;a couple of mornings/afternoons a week, every week, for months. PEACH (who are the leading provider of ABA) offer mainly workshops &amp; training events for parents &amp; their volunteer tutors to go to, plus there are the supervisors who would teach us and them.<br /><br />But it's a massive deal. It would involve interviewing people, letting them into our home, allowing them to build up a rapport with our precious boy. And it would be 5 or more days a week! Constantly preparing teaching materials, reading session reviews.<br /><u><br /></u>So is it even the right thing to do? Is it making a big deal that's actually unnecessary? Why not stick with what the NHS offer? Well, the therapists we've seen are great, but it's hardly frequent. We haven't seen the speech therapist for 3 months, the occupational therapist has met River twice and worked with me 2 or 3 more times in about 4 months. Portage (educational play therapy) will be for an hour a week starting September. Doesn't really compare to the 30 hours a week intensive ABA does it?<br /><br />Maybe I'm clutching at straws. I read <a href="http://www.dailymail.co.uk/health/article-1023351/The-great-autism-rip---How-huge-industry-feeds-parents-desperate-cure-children.html" target="_blank">this</a> the other day, and wondered if I have the same desperation. But River is so young, these early years are so important, and these decisions have to be made.<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-KdP0CH2J4gs/UCZ5xUNALpI/AAAAAAAAALA/i9_DRMHVsls/s1600/IMAG0249.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="ASD research" border="0" height="320" src="http://1.bp.blogspot.com/-KdP0CH2J4gs/UCZ5xUNALpI/AAAAAAAAALA/i9_DRMHVsls/s320/IMAG0249.jpg" title="Autism research" width="180" /></a></div><br /><u><br /></u>Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com0tag:blogger.com,1999:blog-1759228390927287296.post-47065244064401207742012-07-31T21:53:00.002+01:002012-10-20T21:24:37.049+01:00Success!So quite a few of my recent blog posts have been quite negative (understandably I think) so I thought it was about time I wrote something positive!<br /><br />It's very easy to get caught up in River's problem areas, the things he can't do, the areas he's delayed in and the worries that he may never learn to do these things. But when you take a step back and look at where he was 6 months ago, it suddenly becomes apparent that he is making lots of progress-just usually very subtly. And occasionally, he will hit a milestone that is very significant-and that progress is very obvious. It's a fabulous feeling! So I'm going to list a few of his successes that seemed so out of reach just a few months ago.<br /><br /><br /><ul><li><b>Books.</b> River spent a long time chewing, throwing or spinning books whilst all his peers were enjoying stories. He has so many lovely books, and there was a time when I wondered if he'd ever look at them. But now, he's really into books. He doesn't have enough receptive language skills for a story, but he likes turning the pages and looking up at me to tell him what the pictures are.</li></ul><br /><ul><li><b>Eye contact.</b> River has always been pretty good with eye contact, but it was fleeting and was never because he was interested in my reactions or my words. Yet now, River will look at a book or see something on the TV and stare at me expectantly, wanting me to tell him what the word is that matches what he's seeing.</li></ul><br /><ul><li><b>Sharing interests.</b> A few months ago, my friends would come round with children the same age as River and the children would be constantly bringing me toys as if to say, "What's this?" or "Show me how to play with this toy" or "Look what I've got!" They had this inbuilt desire to learn, communicate &amp; socialise. River never did this. It was one of the first signs of autism- he never brought me anything, never wanted to share his interests with me. Now, he'll bring me things. Not to show me yet, but because he wants to learn. He'll bring me a yellow ball then stare at me until I say, "Yellow." Then give me a different coloured ball &amp; do the same. He brings me books and points things out, then looks at me until I tell him what it is. He has that desire to want to learn. That's massive.</li></ul><br /><ul><li><b>Kisses.</b> Every bedtime River insists on Tim taking him to bed, which is very sweet. However, he always kisses me goodnight 3 or 4 times first. I say, "Mummy kiss?" And he looks at me then kisses me on the lips. This is the only time he ever kisses me, so it's very very special.</li></ul><br /><ul><li><b>Dragging me around the house.</b> Now to most people, this would probably be quite irritating. A toddler constantly taking your hand and dragging you to whatever they want. All the time. Usually to the highchair or snacks cupboard. But for us, this is amazing. A few months ago, he would stand still and scream. There was no way of knowing what he wanted. We knew this had to change, so when I knew he wanted to go in the ball pit, I'd pick him up and touch it with his hand before putting him in. After a couple of weeks, I'd stand a foot away from it, take him by the hand, and make him walk a couple of steps to it before touching it with his hand and putting him in. Another couple of weeks, and he would stand next to it, grab my hand and put our hands on it. This progressed until eventually he would find me in the kitchen, take my hand and lead me to the ball pit/highchair/front door. Finally, a way of letting us know what he wants! Massive achievement.</li></ul><br /><ul><li><b>Pointing</b>. This is the biggest one of all. I've been desperate for him to learn to point. So when looking at books, I used to point to a picture and say what it was. After some time, River would move my finger onto the picture he was interested in. I'd then wait until he made eye contact before telling him what it was. Eventually, I took my hand away and he learnt to use his whole hand to select a picture. Once he learnt that this got results, I started moulding his hand into a point each time. Then, he would grab my hand (think he needed it as a prop) and I would hold his wrist as he pointed. He'd often point with his middle finger, so I'd mould it into a proper point &amp; continue. We also used lots of musical books with buttons to practice pointing. Eventually, he got it! And he can now point to things in books with no prompting from me! Such a massive milestone. Here he is in action, pointing at shapes &amp; colours and then making eye contact for me to tell him what it is Xx</li></ul><iframe allowFullScreen='true' webkitallowfullscreen='true' mozallowfullscreen='true' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwx8R20J6YVr66kueaQDqNogk_lbB0IMGjt4BZU3idID13yltR8MYG1gYuioF0YKUezWpp_IJ6wGyX8f2bHnQ' class='b-hbp-video b-uploaded' FRAMEBORDER='0' /><br /><br /><br /><div style="background: url('http://tools.blognation.com/bn/tools/favorite/image/d6f71db0335479540de3927346025a17.png') no-repeat -1px -1px;">I selected this post to be featured on my blog’s page at <a href="http://www.autismblogs.org/" target="_blank">Autism Blogs</a>.</div>Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com3tag:blogger.com,1999:blog-1759228390927287296.post-20767960770604017092012-07-12T23:34:00.001+01:002012-07-12T23:36:52.307+01:00Guilt.Lately I've been feeling really guilty.<br />I feel like there are so many things I should be doing to help River at this most crucial time in his development, and yet I still haven't done them. It sounds like such a rubbish excuse, but it's so hard to find the time- River needs attention pretty much all the time, and when he's napping or asleep for the night there's the neverending housework, meals to cook, cake orders. I also need to put my feet up occasionally!<br />The things that I'm currently feeling guilty about:<br /><ol><li><b>Sensory table. </b>River has a sand &amp; water table in the garden. I need to clean it all out, assemble indoors and fill it with dry rice &amp; dry pasta. This is so I can hide River's toys in it &amp; he can plunge his hands in it to retrieve the toys. After he's comfortable with that, I can replace the rice &amp; pasta with something like wotsits, that leave a residue on your hands but aren't too messy or sticky. We can then build up to playdoh, sand &amp; eventually paint &amp; gloop. This is because River is tactile defensive, so he has a real aversion to different textures including any food that isn't dry. But the sand &amp; water table is still in the garden. I need to get on &amp; do this!</li><li><b>Photo cards. </b>I need to print photos of everyday objects- like his highchair, his favourite foods, his beaker, his shoes- &amp; laminate them. I can then show him the corresponding photo card whenever I give him, for example, a drink. The idea is that he'll eventually learn to communicate his needs through exchanging the cards. I've found all the pictures, saved them on the laptop, bought a laminator...I just need to get on &amp; print them!</li><li><b>Books.</b> I was lent a great book called, "The Out of Sync Child Has Fun" by our Portage worker. It has lots of games &amp; activities for children with sensory issues. I've only read a couple of chapters. I have another book called "Playing, Laughing &amp; Learning with Children on the Autism Spectrum." I've read less than half of it. I recently bought a book all about the Son-Rise autism programme, which has a CD-Rom with it too. I haven't opened the book or watched the CD-Rom. I also bought two e-books last week all about sensory processing issues, haven't read them. I really need to read these books!</li><li><b>Websites.</b> There are a couple of websites that friends have recommended, all about various techniques that may help ASD children. I haven't looked at them yet.</li><li><b>Toy storage/organisation.</b> River has an open toy storage unit. It has lots of different compartments, but the toys &amp; books are all on display. It means they're easy to access, but I think it's overwhelming for River. A big jumble of shapes, colours, details. No wonder he doesn't play with any of it. The has no purposeful play. Whereas if all his toys were in tubs or something closed &amp; out of sight, he'd be able to relax more &amp; play with one thing at a time in the correct way. But I still haven't decided what/how. Must do this soon!</li><li><b>Sensory retreat.</b> I've been reading a lot about how children with ASD/sensory issues need a sensory retreat- somewhere they can easily go to when they need to block out the world, block out excess sensory stimulation etc. We've seen a blackout sensory tent that we like, but haven't bought it yet. River would benefit so much from one of these- he's constantly burying his head into my lap, into the corner of the sofa, trying to block everything out. But they're big, we don't have much room. We should just buy one though!</li><li><b>Proprioceptive/vestibular stuff.</b> In order to regulate River and stop him constantly running up &amp; down &amp; crashing into the sofa, he needs to do things like swing in a hammock chair, bounce on a toddler trampoline, have a pillow cave to jump on. These things cost money &amp; most importantly take up a lot of room. But really, River's development is loads more important so I need to just buy them!</li></ol><div>So that's it really. Lots of things I should have done but haven't yet. It's not that I'm not doing things- we've taught River to lead us to things he wants, we do all the things to encourage speech, we use deep pressure touch, we research daily on loads of things.&nbsp;</div><div>But it's never enough. Will it ever be enough? Maybe all mums in this position feel the same. Maybe I should give myself a break- or maybe I should give myself a kick up the bum and get on with all these things!!</div>Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com7tag:blogger.com,1999:blog-1759228390927287296.post-6865975609950519042012-06-21T23:39:00.000+01:002012-06-21T23:39:06.785+01:00We are NOT OK.Yesterday, Tim &amp; I expressed our sadness to some friends that many people close to us haven't been in touch about River's diagnosis. Quite a few friends have sent us virtual messages of support or virtual hugs, but there are many more who have kept very quiet. In fact, many people haven't been in touch at all since we began this emotional journey.&nbsp;<div>One of our friends made a really valid point that I hadn't considered: I often write about the different techniques we use with River, the constant battling to get appointments, what happens at various appointments and lots of proactive, practical stuff. He said the blog gives the impression that we're focussed, driven, and generally sorted. Like we're coping just fine. He also said that people can feel awkward about these things, and not know what to say.</div><div><br /></div><div>So maybe you're reading this blog because you're a friend or relative of ours. Or maybe you know the parents of an autistic child. Or maybe you're a teacher or therapist of an autistic child. Regardless, I just want to open up about a few things that perhaps I haven't expressed very well in my other posts.</div><div><br /></div><div><u><b>1. We are NOT OK.</b></u> Two days ago, we were told that our baby has a lifelong neurological condition. There is nothing OK about that. Yes, we understand we need to think positively. Yes, we're hopeful that River will be high-functioning, learn to talk, go to the village primary school- but nobody can tell us whether that'll happen. There is a fair chance that River may never speak, or speak very poorly. He may have to go to a special needs school. Right now, and probably for the next few years, we will be in limbo. We'll try to focus on each day, but ultimately we will worry every day what the future holds for us and our baby. It has only been 6 months since we initially realised something was wrong. We haven't got our heads round it, we are still grieving.</div><div><br /></div><div><b><u>2. We feel lonely.</u></b> We feel caught between two worlds. There seems to be an ever-widening gap between River &amp; his peers, &amp; it's scary. We're worried that our friends will ditch us as River isn't very good company for other children. Various professionals have recommended special needs groups to us, but we don't feel we fit in there either as River is very physically able &amp; looks 'normal.' We've discovered a lovely autism group, but the children are much older than River. So therefore, we feel lonely.</div><div><br /></div><div><b><u>3.We need a hug.</u></b> I'm not talking physical affection, I mean a metaphorical hug. If people feel awkward &amp; don't know what to say to us- it doesn't matter. "Thinking of you." "Sending you hugs." "Xxx" We don't need a big speech from people. We just need to know that you care and are here for us.</div><div><br /></div><div><u style="font-weight: bold;">4. We feel guilty.</u>&nbsp;So River has Autism. He's not sick. There's no threat to his health. There are so many people in a worse position than us. We have a beautiful child, a nice home, Tim has a job, we're all healthy. There are families out there without a roof over their heads, in hospital with a sick child, who can't afford to feed their children-what right do we have to feel so self-pitying just because River's autistic? This fills me with guilt.</div><div><br /></div><div>The last two days have been spent either crying, fighting back tears, or pouring all our energy into research research research. It occured to me earlier- who knows? Who knows how devastated &amp; crushed we are? Is it their fault for not asking how we are, or our fault for not reaching out &amp; asking for help? I don't know.&nbsp;</div><div><br /></div><div>But there it is. We're not fine, we not doing an amazing job of coping, we're struggling. Struggling with our sadness &amp; fear.</div>Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com14tag:blogger.com,1999:blog-1759228390927287296.post-24274081638511437232012-06-19T15:31:00.001+01:002012-06-19T17:15:50.032+01:00"It is definite that your son has autism."It's ironic how you can be desperate for a doctor to finally say those words to you, and when they do, you want them to take it back immediately. You want to pretend they never said it, and go back to the way things were- desperately seeking a diagnosis to confirm what you already know in your heart, but still having a smidge of hope that maybe, just maybe, you're being overdramatic. Maybe he's just a bit delayed.<br />But it's too late. You've asked the question, and you got a pretty solid answer.<br />"Do you think he's likely to be on the autistic spectrum?"<br />"I'm pretty sure of it."<br />"How sure are you, because I'm 99.9% sure but I'm no expert, I'm just his mum."<br />"I'd say it is definite that your son has autism."<br /><br />We fought hard to get this appointment with the paediatric autism specialist. She is the best, and I wanted her to meet River as early on as possible. However, the appointment was scheduled for 3 weeks before his 2nd birthday. "You won't get a diagnosis on the first appointment," people said. "Definitely not before two. That's far too young to diagnose." Online autism forums are full of stories of people battling for a diagnosis for years and not getting one, stories of children being observed at Child Development Centres for weeks. I had emailed some information to the specialist a couple of months ago, and she explained that as River is so young they might have to give him a provisional diagnosis and not formally diagnose him until he's older.<br /><br />The specialist started off by asking us when we first had concerns for River. She then asked what other professionals were involved and what River's current development level is. Can he hold a crayon? No. Does he recognise photos of you? No. Does he understand the word 'bath?' No. Does he say any words? No. Will he stack blocks? No.<br />River spent the whole time eating, and we pointed out that if he wasn't eating then he wouldn't have coped with being in the room at all. He briefly looked at her, but not for long- and when she rolled a ball to him, he just cried. He also walked around the room a lot, often on tiptoes, in his own little bubble, occasionally breaking out into a big grin or chuckling to himself.<br />She asked about the pregnancy, birth, how well I bonded with him as a newborn, his overall health, checked his head circumference, and asked about his diet.<br /><br />She then said that he'll need to have a blood test done on a separate date just to check that River doesn't have Fragile X or any other chromosome abnormalities, as there are some that are very rare but serious, and present themselves with symptoms like autism.<br /><br />I think that was when I asked her opinion. She didn't mention a provisional diagnosis at all, so I don't think there is any doubt in her mind. I asked if she thought he was high-functioning, and she said that they can't assess where on the spectrum a child lies until they are school age but said he does seem severe in some aspects. She said not to focus on that for now, and that some children who seem severe make a lot of progress in a short space of time.<br />She asked how we were feeling &amp; both Tim &amp; I got a bit teary. She said that even though we were sure of River's autism, having it confirmed is still a shock and we should allow ourselves to grieve as we'll be following a different path to what we'd envisaged.<br /><br />I don't know what else to say about it just now, but I read a fantastic poem in the Cerebra newsletter yesterday that I'd like to share.<br /><br /><b><u>The Journey</u></b><br /><b><br /></b><br /><b>When I looked into your eyes</b><br /><b>You didn't hold my gaze</b><br /><b>I knew that you were different</b><br /><b>In those early days</b><br /><b><br /></b><br /><b>You didn't crave my cuddles</b><br /><b>You wouldn't sleep at night</b><br /><b>I knew deep down inside</b><br /><b>That something wasn't right</b><br /><b><br /></b><br /><b>You did not respond to me</b><br /><b>When I called your name</b><br /><b>I felt like a failure</b><br /><b>And that I was to blame</b><br /><b><br /></b><br /><b>I longed to hear your voice</b><br /><b>But all you did was cry</b><br /><b>I started to believe</b><br /><b>There must be a reason why</b><br /><b><br /></b><br /><b>When you got the diagnosis</b><br /><b>I didn't know what to do</b><br /><b>They told me you had Autism</b><br /><b>And it would always be part of you</b><br /><b><br /></b><br /><b>We started a new journey</b><br /><b>It had only just begun</b><br /><b>I was still your mother</b><br /><b>And you were still my son</b><br /><b><br /></b><br /><b>Although you couldn't say the words</b><br /><b>I knew you understood</b><br /><b>That I would do my best for you</b><br /><b>As every mother should</b><br /><b><br /></b><br /><b>The road ahead was twisty</b><br /><b>With many a sharp bend to turn</b><br /><b>The path ahead seemed daunting</b><br /><b>With so much about you to learn</b><br /><b><br /></b><br /><b>Although I wasn't certain</b><br /><b>Of exactly what to do</b><br /><b>I soon began to realise</b><br /><b>I would have to fight for you</b><br /><b><br /></b><br /><b>Our journey would continue</b><br /><b>We would stay on this road together</b><br /><b>I would be right by your side</b><br /><b>Always and forever.</b><br /><b><br /></b><br /><b>By Donna Woods</b>Rivers Mummyhttps://plus.google.com/102210314333835230967noreply@blogger.com3